My DH's blood pressure has dropped 20 points (top and bottom) and his pulse has dropped around 15 to 20 beats per minute. His heart is OK (we had a nuclear stress test and echo - his heart is the same as it was 2 years ago). He is having 23 hypopneas an hour even though he is on a VPAP/BPAP. My DH has either Lewy Body Dementia or Frontal Temporal Dementia (they can't decide). The neurologist said my DH is likely having multi-symptom atrophy. The doctor said that the life expectancy is likely 12 to 24 months.
Does this sound familiar to any of you? I feel like this is a major step toward the end. Frankly, it scares me ... a lot!
Any advice or experience, comments or suggestions, thoughts or ideas? I really need some help here.
Sharan-lack of activity might account for your husband's drop of B/P and pulse. Just as a guess the part of his brain that controls breathing might be damaged by the disease process. Sorry-no good vibes.
Sharan, Alzheimer's (and FTD and LBD, I think) slowly shuts down the muscles and nerves and their connections in the body, and so the slowing down of the different parts of the body would be consistent with that. There are several here who have had bed-ridden spouses, and I think Sandi had the longest period. She is the only one I can remember who discussed the atrophy. Hopefully she can share her experiences with you.
Have you tried giving him massages? When my husband feels extra cold, I assume his blood pressure has gone down, and I put lotion on his arms and legs and rub them for ten or fifteen minutes and they warm back up.
I'm so sorry your husband has reached this stage. I wish I could be more encouraging AND HELPFUL. (((HUGS)))
Thank you for your responses. My husband's activity level has remained about the same for the last 2 years. He goes for walks (though not every day), he watches TV, he shoots pool, and does small activities around the house (including, with help, laundry - though that has fallen off a bit lately).
I do believe that this is connected to his dementia. His pain level due to degeneration in his spine has always been between 3 and 8. Lately, he has frequently been saying it is a 1. His body isn't getting better, his brain is just not reading the signals right. He burned his hands by leaving them under hot water a few weeks ago (he and my son turned up the hot water heater without my knowledge). Even though he burned his hands so bad that several levels of skin peeled, it took him 1 1/2 weeks to tell me that he thought they were peeling because he burned his hands under the water. The burn had to have been worse than any sunburn I have ever had. The peeling was so bad, I was researching all of his medicines to see if something could have caused the peeling. Long story short: my DH's brain is not processing information and it is getting much worse.
I have a blood pressure machine with a cuff (it is automatic and I used myself as a baseline so it is accurate). I take his blood pressure regularly. In fact, the cardiologist's tests showed that his blood pressure is running around 102/62. His blood pressure up until the last 2 weeks averaged 135/80.
I have started doing almost all of the routine maintenance (finger and toe nails, massaging his feet with foot cream, etc.).
It is just moving so fast!
Your hugs and understanding and your prayers are helpful and encouraging! Thank you!
Sharan. My husband is 65 and had been having what they are calling fainting episodes for the last few years. He has been on anti-seizure meds because they don't know what is causing this (for two years, DH just would black out and fall with no after affects or knowledge that he fell). Then around last Dec., DH began near fainting so the neurologist put him on a different med. Today as we were walking, I noticed he began to shake and was ready to sit down in the wheelchair (I take this on our daily walks just in case as I could not carry him if he fell or got dizzy). It seems that when he is standing for any length of time, DH sometimes gets this lightheadedness. I make sure he drinks plenty of fluids and began giving him a banana prior to our walk. Then I also make sure we have fluids while on the walk. No one else has complained of this so I was curiour when I saw your blog. As for the hot water episode, I noticed early on that DH could not tell if something was hot or cold or if he was in pain or not. In the AM I don't give him his coffee until it has cooled down. I do the same for his meals. I give the showers and wash the hands so I know if the water is too hot.You may have to begin supervising the use of the water or turning it on for him to test the temperature. Good wishes are with you.
I seem to recall that New Realm's husband had frequent drops in blood pressure and fainted easily. Diana, if you read this, do any of Sharan's husbands' symptoms sound similar to Paul's?
I know that has to be scary, for both Sharan and Brindle... We can't walk more than 10-12 feet without assistance (meaning HE can't...) so recreational walking is not in the picture. (Why do I say "WE" can't walk.... it really does seem like we share the disease sometimes, doesn't it?)
I'm so mad right now I could spit. John too has had 4 near fainting spells in the last 5 months. 1 trip to the er and 3 hospitalizations. Could someone have told me that this may be a progression of ftd? They run tests for stroke and cardiac events which is a good thing but no one has ever linked it to his ftd. They say they can find no cause for it when it's staring us in the face. I have been foolishly seperating his mental condition from his physical condition. This post has been a real eye opener for me. The knowledge won't change anything but now I can accept it and stop asking why. Thanks for listening friends. cs
Sharan, 4 years ago I turned our water heater down about as low as it will go, for my Mom. I still have it the same now for my dh. I run all hot water to fill the bathtub and it is comfortably warm and now I don't worry about him burning himself. I use cold water in the washer anyway and so the dishwasher is the only other place calling for hot water, but it works ok with extra warm. I also have the stoppers removed from the bathroom sinks to prevent overflows.
My DH has has a few blackouts in the last couple of months. He is also having more balance issues and more falls. Last year we did go to the ER once after a sudden problem, thinking it might be a stroke. As some of you have experienced, that only resulted in tests that were normal and a loooong day at the ER. His walking is more tentative and is starting to look like the shuffle mentioned in AD.
Since DH also has type 2 diabetes, we always check that first, but have found it is "normal". We have gotten a shower chair, and I check on him during his shower. The other night, he told me is was good I checked because he had "forgotten" he was showering, and admitted this has happened at other times also.
Like others have stated, it is scary! Each change is just another reminder of where we are headed. Each "chore" we take over is just another reminder.
Thanks so much to all who post and share each and every scary change. It helps to know we are not alone, it helps to have a "warning", a "heads up".
Don't you think it odd that nobody in the Medical profession suggests to us that this is a common occurance and we should expect it to happen. The first 2 ER visits with my Mom nobody even let on that they see the passing out episodes frequently.
One of the EMT mentioned to me it sounded like a TIA after we had been to the ER twice. Then the Hospice Nurse thought the same. I suppose the medical profession is trained to do all appropriate tests running into thousands of dollars when we do take someone to the ER. Looks like it is up to us to make the decision not to take them unless other symptoms of illness follows. I hate the ER.
Ten years ago, almost, my husband had the first "fainting spells"; a friend who is an ER doctor said he thought that's what they were (by description, not seeing), rather than TIAs. He's had one or two a year ever since. Somehow he's never had one standing up - he always manages to sit down; as far as I know they never happen when he's in bed. They do seem to slightly be related to stress, overtiredness. He's 85 almost. Last summer when he had one (with me gone) he got taken to the hospital where they sedated him, tested him, screwed him up.. I brought him home and he recovered back to normal quickly. They'd found nothing wrong. Since then he's had two others. I've just held him, eventually tried to get him into bed, and left him to sleep it off. He takes no meds specifically for that, wasn't taking anything until a couple of years ago, and as I say, they'd been happening from time to time since he had been in the hospital ten years ago.
I tend to have very low blood pressure and become light headed and dizzy sometimes. When I check my blood pressure at those times, sure enough, my blood pressure has dropped. I asked my doctor about it. He said it could be that I let myself become somewhat dehydrated. It does seem to help if I be sure to drink a lot of water.