Four years have passed since I posted anything. Maybe that’s because we’ve been busy living this confusing life. In those years we have been thru a lot, mostly medical problems for Gerry, but I’ve had a few issues as well.
I’ll start off by saying now we have all of these doctors, a Primary Care, he handles referrals to all other doctors and he manages Gerry’s Diabetes and non-special needs. Then there’s the Gastreoenterologist, he is very important because it seems a lot of his problems come from these areas. He has non-alcoholic liver Cirrhosis. As best as we can understand it was caused by his diabetes and the meds he has taken over the years. During these years he has been taken To the ER 5 times with bleeding, bowels and vomiting. three to 5 day hospital stay each time. Test this test that. infections undetected and identified. In the end no results except for the first and last time.
First time when and why the Cirrhosis was detected, he was bleeding from Varices in his upper abdomen. He still has one that can’t be cured or removed because of its location. Therefore constant risk of it bleeding. So he takes an extra blood pressure med to keep his BP low. So far so good. The last because he had gallstones detected in his six month scan. So an ERCP was done to remove the stones because they blocked his bile ducts. Got home and developed a fever. Back to the ER. Next day had to redo the ERCP because from the first one his bile duct spasms and caused it to get blocked again. Fine, this one left him with an infection, but, can’t find the origin nor the right antibiotic to treat it. Five day stay. Turned out to be Sepsis, which scared me to death. People die from this one. So he came home with a pic line so that I could give him the antibiotic daily for seven more days. Oh yes and they had to put in a stent in the bile duct which had to stay two months. What did that mean, another ERCP!
During this stay and all of the hospital stays they would not give him his Aricept and the more days he goes without it, the more confused he gets. Odd, huh?
Gerry has had so many kidney stones, we lost count, but he does have them in a vial for a souvenir. He has also had Bladder stones, which we caught and kept three of them, good thing they weren’t barbed! So he has a Urologist and a Nephrologist. And let’s not forget his Dermatologist because he has Psoriasis, which he takes shots for. A dentist of course.
He had to get a Cardiologist because he was having heaviness in the chest and was out of breath when walking from the back yard to the front yard, not that far so concern. Good catch by him, he had to have the procedure to have four stents put in because of the blockages. Doing very well from that one.
So he had to go to a Pulmonologist to be tested for sleep apnea or breathing problems. From the overnight sleep study, they decided he needed a cpap machine to sleep. Well that didn’t last too long, but he did try. He would wake up in the middle of the night screaming and scared from the mask or just the little nose thingy. So we let the Pulmonary doctor go. We have found that taking a gummy Melatonin or two or a little CBD oil on his wrists help him get a good nights sleep now.
After he had heel, thumb and a couple minor accidents we were able to put his Orthopedist on stand by for a while. His tool work is down to hammer, nails, screws and screwdrivers, rake and shovel now. But he is back to using the lawnmower, after taking a two year break from mowing.
Well during this time, his Mother died at age 93. It haunts him a lot because he misses her so much and he hates the way she died. She had a massive heart attack while in the bathroom in the middle of the night. Of course he wasn’t there with her. But we had been with her the day before. He also found out that his Mother disinherited him in 2010 after his dx of dementia. This really hurts him still. Moms roommate of 65+ years died at age 97 a couple years later. His son still will not talk to him so that has continued to be a great loss for him. But his grandson has grown up and left home and has spent time with him during these years so that’s helpful. And of course we have our Sweet Callen visiting when he can, he’ll be 10 this year. Out of his family on his Moms side only two of her sisters survive. Hopefully they will be fine and free of this crazy disease that has taken so many. The last two brothers and one more cousin has died from Alzheimer’s in that time. So out of those last ten of his Moms big family, three brothers died from Alzheimer’s for sure and probably one sister. One sister died from Diabetes and a heart attack. 1 cousin committed suicide by jumping off a bridge over a busy interstate highway. 1 who was never quite right? Died of a heart attack. 1 rode his skateboard down the middle of a busy highway into traffic and died. And of course Gerry’s only sister died from FTD and since her only daughter (48) has been diagnosed with the same genes as her mother had that caused her disease.
The last doctor that has been added was a Neurologist. I thought it was time that someone addressed the subject of his mental state. His PCP and Gastro docs are the 9nky two that say that he even has dementia. They do the best they can in understanding. So the thought was that the Neuro would interview him then go on to have s brain scan....nope. He said he had seen one that he had done in 2017 and saw nothing to be concerned about. Have him a 30 question verbal test and he passed with flying colors. Scheduled him for a visit in six months. That’s it. So Gerry asked him if he could quit taking the Aricept then. He said only if you are willing to take the risk. I recommend you continue with it. So this is when my trouble began. He planted a great seed of doubt in both of us.
Have I imagined all of this because that first doctor said he has dementia, probably Alzheimer’s and put him on Aricept. What about all of the problems he’s had? There is so much that has happened that I haven’t written, like the falls, the times he hasn’t known me, when he can barely talk, when he chokes on food, when he falls and hits his head. When he can’t remember so many things. I am losing my grip right now. So on the 23rd I am going to a seminar held by specialist and doctors of all kinds at UTSA downtown, so that maybe I can get some answers that I much need. And oh yeah, do we take the chance on him quitting the Aricept? This question comes up every couple of days now. I’ll update this after the 23rd, who knows maybe he has been cured of whatever or maybe this medicine is more than anyone knows. I’ve been thinking, maybe I need to start taking it?
Saturday, February 15, 2020
Friday, March 11, 2016
It's about time for an update. 2016
Whether or not anyone see this or not really doesn't matter, because this helps me to have a memory of things long passed. Now and then I have to come back and read these posts to remember what ever happened to change our lives so much. 2009 was a long time ago and then again it was yesterday. Gerry has been the reason I live. Being afraid for so long that at any minute he'd be gone, which still could happen to any of us, has calmed. Things have gotten so good that I don't even think of it. Once you get used to the idea of the big change it becomes a non issue. The most times it comes up is when we are having fun and Gerry will pop up with, "don't mind me I have Alzheimer's". People always just laugh or say, no that can't be. We have many meaningful conversations with people in odd places about this disease. One thing I've learned is this, people want to talk about it but if it hasn't happened in some part of someone's life, most people don't want to talk about it. Also people think that memory is the only thing related to AD. While memory is an issue, there are so many other things that to me are greater concerns. Also, Alzheimers appearing in a elderly person is a little different from a younger person.
Over the past two years Gerry has settled in to a kind of routine. He stays busy. He still doesn't watch a lot of tv but he does watch some. But These days he makes sure to be careful. After almost cutting one thumb off with the table saw, and dinging another one with it, he finally listened and sold the table saw. Now all I have to worry about is the hammer, the floor, the ladder, all those little things he uses almost daily. He is smarter, calmer and works thru on one project at a time. He even finished those shelves that he said I wanted in the pantry that caused the big thumb cut way back. He has increased his coin collection to epic size and spends a lot of time on it. He has worked in his little room and made it all his. He has more little crap stuff hanging on the walls, sitting off he shelves. I go in now and then and there are always new thinkgs to see. He love tiny little toys. One night this week I awoke in the middle of the night and was in the bathroom when from a storm raging outside the electricity went off . So in the quiet, I'm sitting there and all of a sudden I heard this weak little "quack", then a few second later I heard it again. I had the feeling I was still asleep and was dreaming because we don't have a duck! So I started walking thru the house to see if I would heard it again, there it goes "quack" . I went every where trying To locate the sound in the dark. Finally in his room I isolated the sound. He has a stuffed duck which is about he size of a big basketball and evidentially the batteries were dying and he duck was quacking. I just sat there and laughed while taking the batteries out of the duck. It's always something funny with my husband.
There is always a downside of course and ours is the fact that his son has cut him off completely. He can't really even explain why, he is very angry and just says, "I can't take it any more." What do you do. So he has stayed away and grieved daily for his only son and oldest grandson whom he loves more than life. We have no idea of how to mend this gulf. No one will get involved to help. You can't force someone to talk to you who is not willing. I pray daily for this to change and if I can ever come up with a way to change it I will but it doesn't look good. We both have a great worry that he may be experiencing early stages of AD because the anger and other things reminds us both of Gerry way back when, BAD, before AD. This is one person whom we would like to see benefit from being tested to rule out future problems. We pray we are wrong.
On a high note Gerry and his Mom have really been getting along very well. They talk for at least an hour every Tuesday and he goes to visit when he can. His mom is now 90 yrs old and is in the best health both mentally and physically that she has been in for years. He lives for his Tuesday chat with his "crazy" Mother, that's a private joke with them. We hope that this continues on for many years, we just hate living so far away from her.
Another downside is that his only sister passed away in July 2015 after a terrible battle with first FTD and second ALS. Although we weren't allowed to see her, we both know that it was an excruciating way to die. So there is another link to the Alzheimer gene being in this family. She was only 65. Also his Mother's last brother who is 87 has worsened in his mental health and is very deep into the stages of Alzheimer's. This is very sad because of not only the disease but his living situation. So out of her 10 half siblings and her 9 siblings there are herself and 2 sisters (in good mind) and 1 brother left. Many of the older 10 died from AD, not sure how many, and of the 10 of my which Mother is the oldest at 90, 4 died from AD and 2 from diabetes. I hope that adds up to 10.
This should be about Gerry, but I feel here things are important in his life and have a bearing on it. His health has been good, he has controlled his diabetes pretty well. He's had a problem with high potassium but I think it's fixed with medication and a good kidney doctor. I am so impressed with all of his being and am so happy he is doing so well. We tend to stay away from stressful situations and find that that is helpful in controlling the beast. He has a best friend from I think sixth grade thru graduation, they reconnected at their 50th class reunion and have rekindled their friendship and it has been the greatest thing ever! Everyone needs a friend like Frank.
I'm always reading and doing surveys online in reference to Alzheimers. I entered us both in a brain bank called Mindset, pretty interesting stuff. So we are in a brain bank. Along with that I signed him up for a Clinical Trial with me as his partner. Yesterday was our first session. He passed that and they will call us back in for the next session. He did really well. His well being is a testament, I think, to the medication. Aricept that he has been taking from the beginning. It tells me that early detection is utmost in conquering Alzheimers and related disease. If we can be of help to others it will be wonderful. Everyone needs to pitch in and do what they can to help.
Wednesday, January 29, 2014
January 2014 - How much has changed?
It has been 5 years since the big changes were noticed and this summer 5 years diagnosed. Things have pretty much settled down to normal and I find that I am questioning myself if this is real or if I imagined it. Does my husband really have this terrible disease or am I over-reacting to the normal, albeit early, aging process of any one. For the most part everything is fine. And I have to admit, his memory is better than mine. Gerry continues to thrive as a normal unaffected man. Well as normal as it goes. Since my last post which was too long ago, not much has happened epically that is. Callen is now 3 yrs old and we don't keep him on a regular basis and we hate that. But we do see him a lot. What a great kid and Grandpa loves spending time with him.
Since January 2012 was the last post, I can't even think about all the things that have happened during that time. But I'll hit the highlights, if I can call them that. We've traveled a little, going to Vegas 2 times and on a cruise and to the beach as well as the mountains for some snow time. All of which were great trips for us and especially Gerry. On the cruise I was sick the whole time, so he really enjoyed that. He was able to wander around the ship and talk to people and not be "shushed" by me when he talks too much. Of course when we travel by car, I drive. Gerry has finally come to the conclusion that he cannot drive in traffic when it is complicated any at all, so that was something he came up with on his own. I also went off on a couple trips on my own. I drove all the way to the outer banks of NC to see my niece and her new husband repeat their vows on the beach. I went to WDW with our Grandson Nathan and spent a wonderful week with my family and really had a ball. I also drove to WV to visit with my son Donnie. Right now I will hesitate leaving him alone again because of his recent accident.
I'm getting ahead of myself, but it really doesn't matter when it happened, it's just the fact that things happen. But before I get into that I'll say this. Over this period of time Gerry has really been thriving. That is why I wonder if I'm making too much of this. He seems to be very healthy and for him happy. I've mentioned the problems with his Mom. Well, things got better for them for a while and it almost got to the point 2 different times that they would get to see one another face to face. But both times his sister intervened and it didn't happen. I won't go into the details, frankly because I don't think you'd believe me if I told the stories as they happened. I wouldn't. But, as it stands now they do not talk. It got so stressful for him that he just ended it. He just said he had to let her go for his own sanity. He has not talked to her since last August. She has called a couple times and he sees her number and won't answer, his choice not mine. He stepped in and rescued himself this time. So when things like that happen, what can I say? His mind is sharp? It is, at least I understand why he's doing it. Maybe no one else does, but I do.
These things that he does makes me say, "he's fine". If he gets upset with me because I question him, or he thinks I don't trust him, I think that he is justified in being upset. So, I just let it go that I am over reacting. This happens a lot. If in the middle of Callen eating his meal, Grandpa interjects a piece of candy or cookie, I make the mistake of telling him not to do that. He gets mad at me. If I tell him to quit playing games with him while he is eating, he gets mad at me. But, I also know that if Callen doesn't eat his meal, Grandpa gets upset because he doesn't finish eating. I never know if I am right or if I am wrong. I know these are little things but my mind goes to that place where the judgment he uses is not harmless. What if he lets him do something he shouldn't that could be harmful to him, do I wait until it happens or do I keep a close eye on him? I see these little things and I can't help myself. But I say, what's the harm? But, when will it happen that it is the harm? Maybe never, but can I take the chance. My heart knows that Grandpa will never let anything happen to our little Grandson. But my brain tells me, what if his judgment is skewed at that time? It's just something that I have to be aware of.
2012 Gerry had a heel spur that was really making it difficult for him to walk. So he had surgery on it. It took him over 6 months to recover and he still has a little difficulty with it. I have to tell you those were not fun months. But I can't blame any of it on AD because any man faced with this would have been disagreeable for that time. So how can I even think any of that time would have told me anything other than "recovery was going on". With 2013 coming to an end I thought that we had made it through the year with no mishaps at all. The year has been good because Gerry has new doctors now and he really likes them. The one he really likes is his "Pharmacologist/Dietitian" Dr G. She is just a ray of sunshine to him, he will do anything she tells him to do. He started writing a diary of his meals and of his blood sugars in a spiral notebook. He had really gotten everything to the point that he was really making great strides in controlling his Diabetes for the first time ever. I was so proud of what he had done. This weighs heavy on me because I am the one who feeds him and I am responsible for the food he has in front of him.
But then it happened!!! Dec 30 2013, he was putting up a few little shelves in the utility pantry for me to sit things on. Except in my defense, it was his idea not mine. He was nearly finished and had to cut just a small 12" brace to make it perfect by taking off 2" of the wood. I heard this horrible scream from the garage. After about the 4th scream I went to see what was wrong expecting that he cut it wrong or bumped his elbow on something (another story entirely) only to find that he had cut his thumb with the table saw. An accident that could happen to anyone, no matter how experienced. The only thing I saw that he had done wrong was this: he took the guard off the blade. Well, I had to rush him to the emergency room and that followed with a surgery 2 days later to repair/save his damaged thumb. He is now 1 month into it and after his 3rd cast change, he's doing pretty well. He has learned to do everything except tie his shoes and button his pants without the use of one thumb. He had a great surgeon and we are in great hopes that he will have use of his complete thumb. If not at least he'll be able to use it without bending it. The doctor told him "No more power tools"!! I've told him this but he will listen to the doctor. So, my theme song is "There's blood -Power Saw for Sale". Sung like Jimmy Buffett's new song "Earl's Dead - Cadillac for Sale". We still have so much humor.
What has this got to do with Alzheimer's Disease and it's progress? Well this: His last check-up and blood work shows his A1c is back up too high. This stresses him out, for all he can say is "why?" The doctor explained to him that when you have a trauma (surgery) on your body like he had with his thumb, it's very normal for your blood sugar to be high. Therefore, we'll wait until his body has healed and start over again with his normal routine. He has a hard time understanding this. Another thing that has come out of this is his own realization that he starts talking and can't quit. He tries to tell a simple story and it turns into a long, long saga. If he asks a question, he will ask it then answer it and then ask it and answer it over and over, usually until I stop him. When he talks on the phone he uses the speaker phone so I can hear everything that is said. Yesterday he was talking to his doctor about his A1c and was becoming upset about it, but he wouldn't stop talking. I hear the doctor yell at him (to get his attention) and say "Please stop so that I can talk to you". So, every now and then she would yell at him so that she could continue. I have to say that when I say "yell" I mean she raises her voice to talk over him. I was so happy to hear her do this. I do it all the time and he thinks I'm mean and rude to him. But sometimes that's the only way you can get a word in. He asked me when he got off the phone and a few times later on, "have I always been this way?" And I told him "no, not always". He now realizes what he is doing and is determined to quit. He said I won't talk any more. I tell him, but you can't do that you have to talk. He says, "but you don't understand, when I get started - I can't seem to stop". Of course I know that this will only last for a little while and before I know it he'll be chattering away again as usual. My problem? It's not getting tired of hearing his voice and scream at him to be quiet!! I want to hear his voice forever. I never want it to quit. But I am human and things do bug me. But I am proud to say, I am much better than I was 4 years ago.
Where are we right now? Well, next week when we go for his check-up we will talk to the doctor about adding another medication or upping what he is taking now. The great thing about this doctor is that since he's been going to him, he has taken him off all medications for diabetes (metformin and insulin only now) and has changed his blood pressure meds and taken him off statins to solve a high potassium problem. The statins are the culprits so his cholesterol his back up. He still gets uncomfortable in a crowd; he feels left out of conversations because he can't keep up; he gets depressed often; and his anger flares up about 1 time a month; and don't get him started on politics!!!
Since January 2012 was the last post, I can't even think about all the things that have happened during that time. But I'll hit the highlights, if I can call them that. We've traveled a little, going to Vegas 2 times and on a cruise and to the beach as well as the mountains for some snow time. All of which were great trips for us and especially Gerry. On the cruise I was sick the whole time, so he really enjoyed that. He was able to wander around the ship and talk to people and not be "shushed" by me when he talks too much. Of course when we travel by car, I drive. Gerry has finally come to the conclusion that he cannot drive in traffic when it is complicated any at all, so that was something he came up with on his own. I also went off on a couple trips on my own. I drove all the way to the outer banks of NC to see my niece and her new husband repeat their vows on the beach. I went to WDW with our Grandson Nathan and spent a wonderful week with my family and really had a ball. I also drove to WV to visit with my son Donnie. Right now I will hesitate leaving him alone again because of his recent accident.
I'm getting ahead of myself, but it really doesn't matter when it happened, it's just the fact that things happen. But before I get into that I'll say this. Over this period of time Gerry has really been thriving. That is why I wonder if I'm making too much of this. He seems to be very healthy and for him happy. I've mentioned the problems with his Mom. Well, things got better for them for a while and it almost got to the point 2 different times that they would get to see one another face to face. But both times his sister intervened and it didn't happen. I won't go into the details, frankly because I don't think you'd believe me if I told the stories as they happened. I wouldn't. But, as it stands now they do not talk. It got so stressful for him that he just ended it. He just said he had to let her go for his own sanity. He has not talked to her since last August. She has called a couple times and he sees her number and won't answer, his choice not mine. He stepped in and rescued himself this time. So when things like that happen, what can I say? His mind is sharp? It is, at least I understand why he's doing it. Maybe no one else does, but I do.
These things that he does makes me say, "he's fine". If he gets upset with me because I question him, or he thinks I don't trust him, I think that he is justified in being upset. So, I just let it go that I am over reacting. This happens a lot. If in the middle of Callen eating his meal, Grandpa interjects a piece of candy or cookie, I make the mistake of telling him not to do that. He gets mad at me. If I tell him to quit playing games with him while he is eating, he gets mad at me. But, I also know that if Callen doesn't eat his meal, Grandpa gets upset because he doesn't finish eating. I never know if I am right or if I am wrong. I know these are little things but my mind goes to that place where the judgment he uses is not harmless. What if he lets him do something he shouldn't that could be harmful to him, do I wait until it happens or do I keep a close eye on him? I see these little things and I can't help myself. But I say, what's the harm? But, when will it happen that it is the harm? Maybe never, but can I take the chance. My heart knows that Grandpa will never let anything happen to our little Grandson. But my brain tells me, what if his judgment is skewed at that time? It's just something that I have to be aware of.
2012 Gerry had a heel spur that was really making it difficult for him to walk. So he had surgery on it. It took him over 6 months to recover and he still has a little difficulty with it. I have to tell you those were not fun months. But I can't blame any of it on AD because any man faced with this would have been disagreeable for that time. So how can I even think any of that time would have told me anything other than "recovery was going on". With 2013 coming to an end I thought that we had made it through the year with no mishaps at all. The year has been good because Gerry has new doctors now and he really likes them. The one he really likes is his "Pharmacologist/Dietitian" Dr G. She is just a ray of sunshine to him, he will do anything she tells him to do. He started writing a diary of his meals and of his blood sugars in a spiral notebook. He had really gotten everything to the point that he was really making great strides in controlling his Diabetes for the first time ever. I was so proud of what he had done. This weighs heavy on me because I am the one who feeds him and I am responsible for the food he has in front of him.
But then it happened!!! Dec 30 2013, he was putting up a few little shelves in the utility pantry for me to sit things on. Except in my defense, it was his idea not mine. He was nearly finished and had to cut just a small 12" brace to make it perfect by taking off 2" of the wood. I heard this horrible scream from the garage. After about the 4th scream I went to see what was wrong expecting that he cut it wrong or bumped his elbow on something (another story entirely) only to find that he had cut his thumb with the table saw. An accident that could happen to anyone, no matter how experienced. The only thing I saw that he had done wrong was this: he took the guard off the blade. Well, I had to rush him to the emergency room and that followed with a surgery 2 days later to repair/save his damaged thumb. He is now 1 month into it and after his 3rd cast change, he's doing pretty well. He has learned to do everything except tie his shoes and button his pants without the use of one thumb. He had a great surgeon and we are in great hopes that he will have use of his complete thumb. If not at least he'll be able to use it without bending it. The doctor told him "No more power tools"!! I've told him this but he will listen to the doctor. So, my theme song is "There's blood -Power Saw for Sale". Sung like Jimmy Buffett's new song "Earl's Dead - Cadillac for Sale". We still have so much humor.
What has this got to do with Alzheimer's Disease and it's progress? Well this: His last check-up and blood work shows his A1c is back up too high. This stresses him out, for all he can say is "why?" The doctor explained to him that when you have a trauma (surgery) on your body like he had with his thumb, it's very normal for your blood sugar to be high. Therefore, we'll wait until his body has healed and start over again with his normal routine. He has a hard time understanding this. Another thing that has come out of this is his own realization that he starts talking and can't quit. He tries to tell a simple story and it turns into a long, long saga. If he asks a question, he will ask it then answer it and then ask it and answer it over and over, usually until I stop him. When he talks on the phone he uses the speaker phone so I can hear everything that is said. Yesterday he was talking to his doctor about his A1c and was becoming upset about it, but he wouldn't stop talking. I hear the doctor yell at him (to get his attention) and say "Please stop so that I can talk to you". So, every now and then she would yell at him so that she could continue. I have to say that when I say "yell" I mean she raises her voice to talk over him. I was so happy to hear her do this. I do it all the time and he thinks I'm mean and rude to him. But sometimes that's the only way you can get a word in. He asked me when he got off the phone and a few times later on, "have I always been this way?" And I told him "no, not always". He now realizes what he is doing and is determined to quit. He said I won't talk any more. I tell him, but you can't do that you have to talk. He says, "but you don't understand, when I get started - I can't seem to stop". Of course I know that this will only last for a little while and before I know it he'll be chattering away again as usual. My problem? It's not getting tired of hearing his voice and scream at him to be quiet!! I want to hear his voice forever. I never want it to quit. But I am human and things do bug me. But I am proud to say, I am much better than I was 4 years ago.
Where are we right now? Well, next week when we go for his check-up we will talk to the doctor about adding another medication or upping what he is taking now. The great thing about this doctor is that since he's been going to him, he has taken him off all medications for diabetes (metformin and insulin only now) and has changed his blood pressure meds and taken him off statins to solve a high potassium problem. The statins are the culprits so his cholesterol his back up. He still gets uncomfortable in a crowd; he feels left out of conversations because he can't keep up; he gets depressed often; and his anger flares up about 1 time a month; and don't get him started on politics!!!
Thursday, January 5, 2012
Is It Progression or Is It Regression?
The last few months have found us settling into some kind of routine in our new home. We have our Grandson Callen
who is now 16 months old with us for 3 days a week. On Wednesday
evening we always look at one another and say "what will we do between
now and Monday?" This child has been the best medicine that a Grandpa
with AD could ever get. For most of the time Gerry is pretty happy
about him being there with us. He plays with him and the child
absolutely wants to hang onto him all the time. He finally said "Gra-Pa"
very clearly yesterday. I hate that he said it yesterday because today
Gerry finally got his new hearing aids. What a great benefit the VA
and these hearing aids are. For weeks now he has been very excited to
get them. Today unfortunately, I have found it hard to find things to
talk to him about. I'm aware that if I'm not careful I'll yell at him
rather than just talk, this is gonna take some getting used to. Yeah, I
know it's all about me, huh? You have to realize that it has been many
years that this has been a problem and over the past 2 years it has
become a normal thing in our lives - him not hearing - me either yelling
or not talking. I know this will be so much better.
Since my last post there have been changes. Gerry had a period of time that he was having kidney problems. Stones. Despite fever, delirium, falling multiple times and going to 2 different emergency rooms then to a top Urologist - no one ever found anything wrong with him. He does have kidney stones, but they saw none on the move. Then, don't know where it came from but his Potassium went up too high. The doctor called him every other day and had him come in for countless blood tests keeping check on it. Finally after 2 weeks of changing things and starting things, like no bananas and fish oil, it went back to normal. But from all that good things happened. He gained much confidence in his new doctor, so that was good. Then......................
Later on a follow up to this PCP, he was given a new med for diabetic neuropathy in a small spot on his foot. Always a concern for a diabetic. The new med is Neurontin. I don't know if this medicine made a difference in his AD or not, but if it did it was a good difference. It's helping the neuropathy some. He is sleeping better every night. His thought process is clearer, he isn't as agitated, he seems to laugh a little more. Thanksgiving with the kids was very nice, a lot of people around, even people he didn't know and he talked a lot. He didn't withdraw from everyone like he has been.
Christmas time was much different. A breakthrough, I think or was it a progression of the AD? That is my question now. I hate this!! Why can't I just let what will happen - happen? Gerry was a musician in the Air Force for 23 years and before that he played him trumpet in school from age 10. It has been so many years since he would listen to music. I contacted the band unit he retired from, even though no one he knows is left there, and asked them if they could send him a cd of their music. To our delight they sent 2 cd's right before Christmas!! At first I didn't think he would listen. But as we traveled on Christmas Day to see the kids I popped in a cd that had one of his favorite tunes on it and he turned it up. He listened very intently and made comments of all the differences of the song being played by these younger guys as opposed to what he remembered it sounding like when his band played it. I don't care whether he could actually hear the differences or not, I was just elated that he was even listening. After that we listened to both cd's the rest of the way and it was heavenly. But it doesn't end there. Later that night at our son's house, the two of them went upstairs and listened to jazz music together. This is something that has not even been heard of for many years. His son played his old trumpet when he was in high school and kept the horn just in case his son might want to play it in school when he was old enough. This year in school Nathan his Grandson is learning to play the same trumpet and when we visited he played it for the first time for Grandpa. Another great treat for him was when his son played several songs on his Bagpipes for the first time!! He plays with his hometown Fire Dept. as he is a Paramedic/Fireman. He's only been playing pipes for a couple years, but it was so good!
And remember he only got his hearing aids today, so it wasn't his hearing that made him listen.
So here's what I'm wondering - it's been 23+ years since he retired. Could it be that in his mind he has gone back to those days of listening to music and playing music? Or has the new medication and fish oil that he's taking made some difference in his brain? I really don't care what it is, I'm just happy it's happening. Another thing that I've tried to do lately is to bring some old friends into his life from those AF days. I luckily found some of his favorite people on Facebook and I've passed along stories and pictures and info about them on to him. I can't get him to communicate with them yet but I'm hoping. At least he hasn't asked me not to do it, which if he didn't like it he would ask me to please don't do that. He has done that before about some things.
As I mentioned before Gerry's Mother lives with his sister who will not allow them to see one another. But since July he has been talking to Mom on the telephone on a regular basis and their conversations have increased and gotten better as time goes on. On the downside - hey wait a minute - I have no downside at this time!!!!
Since my last post there have been changes. Gerry had a period of time that he was having kidney problems. Stones. Despite fever, delirium, falling multiple times and going to 2 different emergency rooms then to a top Urologist - no one ever found anything wrong with him. He does have kidney stones, but they saw none on the move. Then, don't know where it came from but his Potassium went up too high. The doctor called him every other day and had him come in for countless blood tests keeping check on it. Finally after 2 weeks of changing things and starting things, like no bananas and fish oil, it went back to normal. But from all that good things happened. He gained much confidence in his new doctor, so that was good. Then......................
Later on a follow up to this PCP, he was given a new med for diabetic neuropathy in a small spot on his foot. Always a concern for a diabetic. The new med is Neurontin. I don't know if this medicine made a difference in his AD or not, but if it did it was a good difference. It's helping the neuropathy some. He is sleeping better every night. His thought process is clearer, he isn't as agitated, he seems to laugh a little more. Thanksgiving with the kids was very nice, a lot of people around, even people he didn't know and he talked a lot. He didn't withdraw from everyone like he has been.
Christmas time was much different. A breakthrough, I think or was it a progression of the AD? That is my question now. I hate this!! Why can't I just let what will happen - happen? Gerry was a musician in the Air Force for 23 years and before that he played him trumpet in school from age 10. It has been so many years since he would listen to music. I contacted the band unit he retired from, even though no one he knows is left there, and asked them if they could send him a cd of their music. To our delight they sent 2 cd's right before Christmas!! At first I didn't think he would listen. But as we traveled on Christmas Day to see the kids I popped in a cd that had one of his favorite tunes on it and he turned it up. He listened very intently and made comments of all the differences of the song being played by these younger guys as opposed to what he remembered it sounding like when his band played it. I don't care whether he could actually hear the differences or not, I was just elated that he was even listening. After that we listened to both cd's the rest of the way and it was heavenly. But it doesn't end there. Later that night at our son's house, the two of them went upstairs and listened to jazz music together. This is something that has not even been heard of for many years. His son played his old trumpet when he was in high school and kept the horn just in case his son might want to play it in school when he was old enough. This year in school Nathan his Grandson is learning to play the same trumpet and when we visited he played it for the first time for Grandpa. Another great treat for him was when his son played several songs on his Bagpipes for the first time!! He plays with his hometown Fire Dept. as he is a Paramedic/Fireman. He's only been playing pipes for a couple years, but it was so good!
And remember he only got his hearing aids today, so it wasn't his hearing that made him listen.
So here's what I'm wondering - it's been 23+ years since he retired. Could it be that in his mind he has gone back to those days of listening to music and playing music? Or has the new medication and fish oil that he's taking made some difference in his brain? I really don't care what it is, I'm just happy it's happening. Another thing that I've tried to do lately is to bring some old friends into his life from those AF days. I luckily found some of his favorite people on Facebook and I've passed along stories and pictures and info about them on to him. I can't get him to communicate with them yet but I'm hoping. At least he hasn't asked me not to do it, which if he didn't like it he would ask me to please don't do that. He has done that before about some things.
As I mentioned before Gerry's Mother lives with his sister who will not allow them to see one another. But since July he has been talking to Mom on the telephone on a regular basis and their conversations have increased and gotten better as time goes on. On the downside - hey wait a minute - I have no downside at this time!!!!
Saturday, July 9, 2011
After Grim Details, there is hope.
I know that from the first two posts I made, it may sound rather grim. But for right now, it's really not. I have learned that maybe the initial shock of AD is over for me. I admit for this first 2 yrs I have accepted Gerry's diagnosis as a death sentence, not only for him, but for me. Maybe subconsciously I have been worried about what I will go thru, what I will deal with, what I am losing, a little too much. I have been focused on Gerry for this time, but it has also made me mad!! He can't help it and I know it, but I react. I have argued with him, and you should never argue with a person with AD. I have gotten mad at him, but I don't think anyone could help but fume once in a while - in my defense - at the insane things he has done. I'll tell you where I have my problem ~ I don't want to make it sound like Gerry is bad in any way, but he has a way about him that just pisses me off sometimes. He is very opinionated, he is quick tempered and can be very negative about just about anything. He has always been that way that I know of. But he has so very many good points, in fact too many for me to go into. Just suffice it to say he is a great guy and I'm glad he is in my life. The only way that I can explain my dilemma is to focus on his negative side, then maybe you'll understand.
AD can cause people to be very negative, to have quick tempers, to speak out inappropriately at times in general be very difficult at times. So how do I know when it's AD or when he's being himself? I know. That's what I'm talking about.
If we had not been on the road living and breathing the exact same air, I'm sure that I would not have noticed the warning signs. But thank God I did notice, because getting him on the Aricept as soon as we did is the best thing that could have happened to him to slow the progression of this horrible thief. I've made the remark to some people when they ask how he is doing that "if I didn't know better, I'd think there was nothing wrong with him." That's how much of a difference it makes. We have tried to take all of the stress away from his life. That seems to be the trigger - plain and simple Stress. So even with the meds, stress can be brutal. They say that there is no difference in early onset AD and AD when diagnosed at age 75 or 80. The only thing different about being diagnosed at age 63 along with the medication doing a good job of masking the symptoms, is that in reality the duration of the disease will probably be noticed for much longer.
Soooo, I just thought I'd share with everyone, that for right now I'm letting go and I'm not going to worry daily like I have been. I'm trying to get back to being some kind of normal. I say that because I'm not real sure what normal is. I want to enjoy life again, which I have not been doing since August 2009. I want to be alive and experience the happiness that can only come with not focusing on the intrusion of Alzheimer's Disease for now. There will be plenty time for that a few years down the road. I'll know it when I know it. Maybe we won't be caught off guard next time.
AD can cause people to be very negative, to have quick tempers, to speak out inappropriately at times in general be very difficult at times. So how do I know when it's AD or when he's being himself? I know. That's what I'm talking about.
If we had not been on the road living and breathing the exact same air, I'm sure that I would not have noticed the warning signs. But thank God I did notice, because getting him on the Aricept as soon as we did is the best thing that could have happened to him to slow the progression of this horrible thief. I've made the remark to some people when they ask how he is doing that "if I didn't know better, I'd think there was nothing wrong with him." That's how much of a difference it makes. We have tried to take all of the stress away from his life. That seems to be the trigger - plain and simple Stress. So even with the meds, stress can be brutal. They say that there is no difference in early onset AD and AD when diagnosed at age 75 or 80. The only thing different about being diagnosed at age 63 along with the medication doing a good job of masking the symptoms, is that in reality the duration of the disease will probably be noticed for much longer.
Soooo, I just thought I'd share with everyone, that for right now I'm letting go and I'm not going to worry daily like I have been. I'm trying to get back to being some kind of normal. I say that because I'm not real sure what normal is. I want to enjoy life again, which I have not been doing since August 2009. I want to be alive and experience the happiness that can only come with not focusing on the intrusion of Alzheimer's Disease for now. There will be plenty time for that a few years down the road. I'll know it when I know it. Maybe we won't be caught off guard next time.
Sunday, June 19, 2011
Why do we deny or look the other way when someone is diagnosed with AD?
Is there anyone that could possibly wrap there mind around the fact that you have AD?
How difficult is it for a spouse or any family member to accept that fact? We can tell you that it sometimes can be very difficult to accept. There are too many questions about the disease to accept it readily. It doesn't have a red rash that changes your face. It doesn't make you limp, or bend over holding your belly in pain. It doesn't make you talk funny or pull your face to one side. You can't have your chest cut open and be repaired. Your hair doesn't even fall out. In the early years there is just no change that can be seen by casual encounters. You can't visit once in a while and notice that your Dad, Brother, Son or Uncle has changed any. He still cracks those silly little jokes that he always has. He still loves playing with the children like he has all his life. He still hands you a little bouquet of flowers or a pretty rock he found outside the exact same as he always has. And yes he does get upset now and then as he always has. The only reason that I saw any change in my husband was the fact that we were in our motor home traveling 24/7 and it was just the two of us and you notice everything. I never thought that was the reason for our making a colossalchange in 2008, but things have a way of working out. If we had not chosen to live this way, who knows how long it might have been before I noticed the changes that were happening. I feel certain that I would not have noticed for a long time.
We saw the changes that took place in his dear Uncle that was diagnosed around the same age as Gerry was at his diagnoses. We didn't see him often but the times we did see him I noticed changes in him. I think maybe I noticed what other people chose not to notice or admit it if they did. I believed our Aunt when she told us that he has AD. I noticed that he was still the same sweet, happy man that we always knew. I noticed that when he saw people that he loved he reached out his arms and hugged them tightly and was so glad to see them, but never called them by name. I noticed that when he saw old friends or people from the church he smiled and shook their hand so warmly and patted their shoulder and told them he was so glad to see them, but he never called them by name. I noticed that when we all were around eating and talking constantly he sat back and smiled and most of the time he would nod off and nap while everything went on around him. He would sit and listen to the family talk about the old days and he would nod and smile and agree with anything they said, but he never had any story of his own to tell, he was happy just to be there among the people he knew that he loved and loved him. I noticed how as time went on he clung to his wife and had to be near her no matter what.
I wondered how she handled all the changes that she saw him go through during the 10 or so years since his diagnosis. I know she loved him and clung to that love and to her faith in the Lord and had the support of her children and of the community. What will I cling to as my husband goes down this road of living his life backward? How will I deal with the changes that I will see in him? That's what I need to learn - how to deal with the changes.
So many people joke about it when they forget something or act silly and that's ok. I just feel that to laugh it off when it is a serious matter is wrong. We have found that a sense of humor helps in many instances. I saw that too many family members denied the disease that took our Uncle. Little did any of us know just how many people in the family were going to be or already were affected by it. We have learned that my husband's family has had this horrible disease afflict so many people, some we know had it, others we suspect had it by symptoms. By now we do believe that it is a Genetic disease. His Grandfather had 2 wives and 10 children by each wife. Gerry is the only son of the eldest of the second 10 children. From stories I've heard, Grandpa probably had AD, but was never diagnosed. He lived to be 98 and suffered from Dementia for many years. From the older set of children I only heard that one died from AD. From the younger set, we know that a minimum of 3 have died from AD and there is a good possibility that 3 others may have.
My husband's Mother has Dementia and has been on meds for seizures for several years. AD has not been diagnosed but we spent 15 years living very close with her and I know that a lot of the symptoms of AD are present in her. I've seen them first hand. Of course those are also Dementia symptoms and I pray that is what it is. Sadly we'll never know because Mom lives in a place that we can't visit and has been cut off from having contact with us. This happened after my husbands diagnosis of AD. I feel responsible for this and will share the blame, but will not carry it alone. This is just as painful to my dear husband as it is for him to know that he is in a no win battle between himself and AD.
How difficult is it for a spouse or any family member to accept that fact? We can tell you that it sometimes can be very difficult to accept. There are too many questions about the disease to accept it readily. It doesn't have a red rash that changes your face. It doesn't make you limp, or bend over holding your belly in pain. It doesn't make you talk funny or pull your face to one side. You can't have your chest cut open and be repaired. Your hair doesn't even fall out. In the early years there is just no change that can be seen by casual encounters. You can't visit once in a while and notice that your Dad, Brother, Son or Uncle has changed any. He still cracks those silly little jokes that he always has. He still loves playing with the children like he has all his life. He still hands you a little bouquet of flowers or a pretty rock he found outside the exact same as he always has. And yes he does get upset now and then as he always has. The only reason that I saw any change in my husband was the fact that we were in our motor home traveling 24/7 and it was just the two of us and you notice everything. I never thought that was the reason for our making a colossal
We saw the changes that took place in his dear Uncle that was diagnosed around the same age as Gerry was at his diagnoses. We didn't see him often but the times we did see him I noticed changes in him. I think maybe I noticed what other people chose not to notice or admit it if they did. I believed our Aunt when she told us that he has AD. I noticed that he was still the same sweet, happy man that we always knew. I noticed that when he saw people that he loved he reached out his arms and hugged them tightly and was so glad to see them, but never called them by name. I noticed that when he saw old friends or people from the church he smiled and shook their hand so warmly and patted their shoulder and told them he was so glad to see them, but he never called them by name. I noticed that when we all were around eating and talking constantly he sat back and smiled and most of the time he would nod off and nap while everything went on around him. He would sit and listen to the family talk about the old days and he would nod and smile and agree with anything they said, but he never had any story of his own to tell, he was happy just to be there among the people he knew that he loved and loved him. I noticed how as time went on he clung to his wife and had to be near her no matter what.
I wondered how she handled all the changes that she saw him go through during the 10 or so years since his diagnosis. I know she loved him and clung to that love and to her faith in the Lord and had the support of her children and of the community. What will I cling to as my husband goes down this road of living his life backward? How will I deal with the changes that I will see in him? That's what I need to learn - how to deal with the changes.
So many people joke about it when they forget something or act silly and that's ok. I just feel that to laugh it off when it is a serious matter is wrong. We have found that a sense of humor helps in many instances. I saw that too many family members denied the disease that took our Uncle. Little did any of us know just how many people in the family were going to be or already were affected by it. We have learned that my husband's family has had this horrible disease afflict so many people, some we know had it, others we suspect had it by symptoms. By now we do believe that it is a Genetic disease. His Grandfather had 2 wives and 10 children by each wife. Gerry is the only son of the eldest of the second 10 children. From stories I've heard, Grandpa probably had AD, but was never diagnosed. He lived to be 98 and suffered from Dementia for many years. From the older set of children I only heard that one died from AD. From the younger set, we know that a minimum of 3 have died from AD and there is a good possibility that 3 others may have.
My husband's Mother has Dementia and has been on meds for seizures for several years. AD has not been diagnosed but we spent 15 years living very close with her and I know that a lot of the symptoms of AD are present in her. I've seen them first hand. Of course those are also Dementia symptoms and I pray that is what it is. Sadly we'll never know because Mom lives in a place that we can't visit and has been cut off from having contact with us. This happened after my husbands diagnosis of AD. I feel responsible for this and will share the blame, but will not carry it alone. This is just as painful to my dear husband as it is for him to know that he is in a no win battle between himself and AD.
Saturday, June 18, 2011
Alzheimer Disease too Early in Life
1. This was the beginning but since then, we have learned so,much. Nevertheless, I’m so happy I did this from the beginning. We were both in a bad place and we have come so far and learned so much, but still have questions. 2/15/2020
There is never a good time to have Alzheimer Disease. But at age 63 or earlier it is more devastating than I could ever imagine. I want to learn how to cope with this life thief in hopes of spending the next 10 years in happiness and hope rather than constant turmoil. 10 years may even be wishful thinking but that's just the thing when will it end, how long will this go on? There's no cure. The time frame is unknown. All that we're sure of is that is will only get worse.
In 2008 we sold everything and started out in our RV to travel and see the country and enjoy the good life. Some people said we were crazy for doing it and to tell the truth - we were both scared about what might be out there for us. But we were willing to take the chance and so we did. We were told that the first 6 months would be the hardest. During that time being together 24/7 in that small space we would learn a lot about each other. We would either divorce or we would kill one another in that time or we might just make it. That first six months was very hard and I did not think we'd make it and both of those things crossed my mind more than once. I just wasn't sure where I'd dump the body. During the 2nd 6 months it was a little easier and we started to relax. As we traveled my navigation skills got worse, no matter what I read on the map or TomTom it seemed to be wrong. But there seriously is a problem with any navigation system sometime. We made too many wrong turns, too many dead ends. This started to get to Gerry along with many other things. I noticed he would rage at what I felt was the smallest thing. He didn't seem to be as grounded as he normally was, he couldn't seem to understand why we would be going a certain direction when he felt we should be going another. He screamed at he in a way he never did before and I was having a very difficult time understanding this. I'm not saying that he never had a short fuse and a bit of a temper when things went wrong, but this was much worse.
The day that I knew that something was really wrong was when we went to a small mall so that I could get a haircut. He walked into the salon with me and said while I was having my hair done he would walk around the mall. After a while he walked in and asked the lady who was sitting right in front of me if he could use her phone to call his wife's cell phone. Even though my hair was cut I looked no different and was looking right at him. I said to him "here I am". It was like he looked through by me, I could tell he didn't recognize me at that moment. He told the lady that he was sure this was where he left his wife but he couldn't find her and he pulled out his wallet to get the phone number that he kept written on a piece of paper. At this point I realized he wasn't joking. Of course being such a jokester all his life it was hard to know. But something about this just seemed different. Then he just turned and walked back out into the mall to look some more. I watched him as he rambled around near the salon looking. After a few minutes he came back in and asked the ladies if they knew where I had gone. I told him to sit over there in the chair and wait and he just walked over and sat down, like a child waiting. Later I asked him if he remembered what happened. He said I couldn't find you in the mall. I said I was sitting right there when you came in and he said he didn't see me. I guess he noticed that I was worried so he said he was just kidding around with me, he knew what he was doing. This was the first time I noticed his covering up for his actions. He was aware that something wasn't right but I guess it scared him enough to try to dismiss it for my sake. That was July 2009, he saw the doctor for the first time in August. The doctor put him on Aricept right away. That was the beginning.
There is never a good time to have Alzheimer Disease. But at age 63 or earlier it is more devastating than I could ever imagine. I want to learn how to cope with this life thief in hopes of spending the next 10 years in happiness and hope rather than constant turmoil. 10 years may even be wishful thinking but that's just the thing when will it end, how long will this go on? There's no cure. The time frame is unknown. All that we're sure of is that is will only get worse.
In 2008 we sold everything and started out in our RV to travel and see the country and enjoy the good life. Some people said we were crazy for doing it and to tell the truth - we were both scared about what might be out there for us. But we were willing to take the chance and so we did. We were told that the first 6 months would be the hardest. During that time being together 24/7 in that small space we would learn a lot about each other. We would either divorce or we would kill one another in that time or we might just make it. That first six months was very hard and I did not think we'd make it and both of those things crossed my mind more than once. I just wasn't sure where I'd dump the body. During the 2nd 6 months it was a little easier and we started to relax. As we traveled my navigation skills got worse, no matter what I read on the map or TomTom it seemed to be wrong. But there seriously is a problem with any navigation system sometime. We made too many wrong turns, too many dead ends. This started to get to Gerry along with many other things. I noticed he would rage at what I felt was the smallest thing. He didn't seem to be as grounded as he normally was, he couldn't seem to understand why we would be going a certain direction when he felt we should be going another. He screamed at he in a way he never did before and I was having a very difficult time understanding this. I'm not saying that he never had a short fuse and a bit of a temper when things went wrong, but this was much worse.
The day that I knew that something was really wrong was when we went to a small mall so that I could get a haircut. He walked into the salon with me and said while I was having my hair done he would walk around the mall. After a while he walked in and asked the lady who was sitting right in front of me if he could use her phone to call his wife's cell phone. Even though my hair was cut I looked no different and was looking right at him. I said to him "here I am". It was like he looked through by me, I could tell he didn't recognize me at that moment. He told the lady that he was sure this was where he left his wife but he couldn't find her and he pulled out his wallet to get the phone number that he kept written on a piece of paper. At this point I realized he wasn't joking. Of course being such a jokester all his life it was hard to know. But something about this just seemed different. Then he just turned and walked back out into the mall to look some more. I watched him as he rambled around near the salon looking. After a few minutes he came back in and asked the ladies if they knew where I had gone. I told him to sit over there in the chair and wait and he just walked over and sat down, like a child waiting. Later I asked him if he remembered what happened. He said I couldn't find you in the mall. I said I was sitting right there when you came in and he said he didn't see me. I guess he noticed that I was worried so he said he was just kidding around with me, he knew what he was doing. This was the first time I noticed his covering up for his actions. He was aware that something wasn't right but I guess it scared him enough to try to dismiss it for my sake. That was July 2009, he saw the doctor for the first time in August. The doctor put him on Aricept right away. That was the beginning.
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