Lily, you didn't ruffle my feathers at all..don't worry about it...my husband had his first (to my knowledge) TIA and we spent the day in the ER, and they ran tests and observed and at the end of the day, let us go home (if they had kept him overnight the insurance would have paid for it, but they didn't so I had to pay most of it!) with the diagnosis of a possible TIA, because they really don't know what was wrong and said so!!! It cost me almost $1,000, so in the event he has another one, I'll observe, give him fluids, and wait and see - if he gets worse, I'll take him in. We all know our spouses fairly well, and if they have had these before, "wait and see" seems to be the best thing to do - HOWEVER, that doesn't keep us from worrying, and from wanting to tell our family here what's happening....we need each other's comfort, understanding, and hugs.
I've been told by an emt friend that if he's comatose, just let him be; if I call them, they have to not only hydrate but also start to resuscitate, even if you have DNR orders. And that can get you into all kinds of problems.
I started this...and I will admit looking back, the Thread Title was a bit strong. He could not eat that morning, the food fell out of his mouth. When I held his juice glass to his mouth, the juice just ran out the corners and down his shirt. All he wanted to do was sleep. I found him with a piece of cut canteloupe hanging out of the corner of his mouth and he was asleep in his chair. That afternoon, he was still sleeping - and I wrote what I did. As the evening progressed - and he woke up from his deep sleep nap in bed, he did eat pudding and drank a glass full of liquid. He was having no trouble swallowing then. The eating and swallowing difficulty only lasted a few hours, I would guess, because he slept most of the day. I hope y'all don't think I was crying wolf. At the time, I just had to tell someone what was going on!!!!!!!!!!!!!!!
nancy i think alot of us were alarmed because ours do the same:) my has done exactly what you are describing then was fine hrs later. woke up from that deep long sleep like nothing. scary. divvi
Nancy, it could also be that your husband had a small seizure.....they usually sleep for a long time after the seizure and then come around like nothing ever happened. Just a thought....
Two weeks ago, Sid woke up feeling very tired. He didn't look right. We went to our support group meeting, and he kept saying he was very tired. He didn't look well when we went out to lunch afterwards. When we got home, he kept saying he had no energy, couldn't do anything, needed to sleep. He fell asleep in his recliner. Of course, he attributed it to the Risperdal, which he hadn't even taken yet. At the time, I thought maybe he was coming down with a virus. He was fine after he woke up. After reading all of your posts, I'm wondering if he had a TIA or seizure.
I'll add my two cents worth. Two weeks ago, Steve slept from 10 p.m. to 1:30 p.m. (nonstop). He had never done anything like that before. As a part of a complete physical the following week, he had a brain MRI--no evidence of stroke or seizure. I think sleeping a lot is part of the disease process.
I've been told the same thing, Marilyn. Sleeping or semi-sleeping...is supposedly very commonplace among AD patients. I had never been around that many others until about a year ago when I began visiting care facilities...and I saw the face of my husband everywhere I looked! It was a real wake-up for me. They were just like him...and I had thought he wasn't "so bad".
I am a residential director of a facility for individuals with intellectual disability. Just this AM we sent one of our residents to the ER by amulance. He is a seventy two year old gentlemen who was exhibiting exactly the same symptoms as Nancy's husband. He spent the day at the hospital and had many tests. As of 6 pm tonight all of the tests were with in normal ranges.As the day progressed he has become more and more alert although not as alert as he normally is. Anyway, the doctors have told us he "may " have experienced a seizure. Certainly the symptoms are similar to a seizure. At the same time the drs. have told us we may not be able to find the cause and that it most likely will happen again. The point is that he is no better for having gone to the hospital, except that as a licensed facility we must always be cautious.
I also think as care givers we have to follow our hearts. Absolutely, no one knows are loved ones as we do and no one can make the decisions we make on a daily basis .
I have mentioned this before but my husbands very first symptom was extreme tireness. He left work over five years ago because he no longer had the energy to work. We have discussed it with every doctor he has seen and no one has an answer. Although his AD has progressed, his lack of energy and need to sleep isn't normally seen at this stage. I have come to accept it simply is how the disease has affected him. Even if to others his constant sleeping seems strange for us it has become the norm.. I guess my point is that those of us who live with it everyday know more about AD then almost any doctor. The important thing, Nancy, is that your husband is doing better now
We're into the 6th year of DX - and my DH NEVER takes a nap! He goes to bed around 10 p.m., and gets up 1-2 times to go to the bathroom; then we both are up around 6 a.m. - have coffee in bed for about an hour; then up and gets dressed. I can count on one hand the number of times he has taken a nap during the day! Strange how this disease affects so many people differently.
My DH sleeps, dozes or has his eyes shut almost every moment day and night unless he is eating or I have him out in the car. I asked him this evening if he would try to stay awake for just an hour and he asked "why". I told him I would like to have him awake a little bit instead of looking at him asleep all the time.
Didn't help a bit - he just proceeded to go to sleep. He usually isn't hard to wake up. I try to keep him out in the car at least 2 hours most days and go in a easy resturant to eat breakfast or lunch.
Yes, swarfmaker. My DH used to doze several times a day. He never takes a nap now and is much more alert. We started out with coconut oil, then switched to MCT oil because of the saturated fat in coconut oil. Now we are using Axona.
Yes, wakeful hours increased by 4 hours. However, Tom became disoriented before he wwent to bed. Contacted Dr. Newport and we decided to not dose later in the day and this has done the trick. Still awake about 2 hours more than usual without napping and less disorientation.
For the Moms in the caregiver group, you had a good idea when your children needed pediatric help. You knew better than anyone else. Same thing with LO. You are great. Trust your gut.
Questions earlier in thread re liability of not going to ER. As a nurse, retired hospital administrator, tried to get people to NOT call 911 or bring terminally ill patients to ER unless there was a problem they could not handle and could not contact primary doctor. There is no liability of not going to ER unless you have relatives, step children included, who do not agree on end of life care. Your living will and power of attorney hopefully are up to date and help guide you in these decisions. If your LO dies at home and is under a doctor's care and is terminally ill there is no problem. Police have the perogative to make a visit in home deaths just to ensure that there was no foul play.
Now I am on a nursing home board of directors and have worked with medical director to reduce visits to the ER by residents. It is very cruel to send a resident to the ER usually in the middle of the night, often to very cold rooms, lie them on hard stretchers for many hours while staff tend to more seriously ill patients, to have useless tests done. They become more disoriented. Of course you must take them if you are in doubt! We try to educate staff to work with doctors to treat them in the home, as 90% of the time they, are usually helped with hydration and/or antibiotics. Hope this helps.
At the day care today, while talking to the administrator, I mentioned this thread. She is not just a nurse, she has personal experience as a family caregiver for parents and other family members. She said that under our situation it is a toss up as to whether to send someone to the emergency or not.
DH has been sleeping more and more. Reassures me to read that many others also do this. Neurologist suggested getting him interested in something. As most of you know this is impossible if DH doesn't want to do it. One day at a time.
scs, thanks for the affirmation of "gut instinct". I don't know if that's an official medical term, but I sure as heck betcha that lots of doctors rely on it when they are working on a diagnosis. I sooooo agree with your hospital re: needless ER visits. My DH was on the B.O.D. for a hospital in the upstate of SC, and many of the people in that area would come to the ER for routine medical needs, such as sore throats, earaches, stomach virus,..and then leave without paying. Hospitals have a hard enough time staying "in the black" in spite of how it seems to most people. I know without a doubt that ER's do not make happy campers in the AD community. NancyB
I was having problems with my husband just sitting and thought that I should be trying to find things for him to occupy his time even though he didn’t like to do puzzles, play games or read. Then I read this from the article on Joan’s homepage, “Understanding the Dementia Experience,” starting on page 13.
“Families talk about their frustration because the person just sits and stares at nothing for long periods of time, and feel that they should be using their time for some purpose. When this occurs, it is important to identify who has the problem. Is the person with Alzheimer disease being harmed by sitting for long periods, or is it the caregiver’s discomfort with this change in the person’s state that is the issue. The apathy is caused by the disease process. As long as the person is receiving adequate nutrition, is getting sufficient exercise spaced throughout the day, and is sitting in a soft comfortable chair so they are not at risk to develop pressure areas, and they seem content, are not showing signs of anxiety stemming from boredom, then their condition should be accepted.”
I should add that he is much more alert since starting on MCT oil.
Yes! Isn't that the greatest article? It just explains so much.
Okay.. what was the name of the movie I saw where the father had AZ and the daughter was determined to get him into a beautiful gorgeous home, but the brother said no, look, he's happy where he is because they care for him and attend to him.. HE doesn't care if there's a fountain in the entry hall.. You have to look at it from the AZ patient's perspective.
I have often been told that sparkling chandeliers do not guarantee top quality care. In many of those facilities, the residents are not even allowed to sit in the big room with the chandelier and/or fountain.
Earlier, I read a post that said their NEUROLOGIST suggested they "get him interested in something". That's unbelievable. Nothing interests my DH, and he also 'just sits and stares at nothing for long periods of time'. Visit Alzheimer Care Faciities and you'll see more residents doing that than playing games. I wonder how many of our neurologists have ever spent an extended period of time with one Alzheimer's patient. Say, 7 days, 24 hours a day. Not just popping and and out of their room in a care facility. In a home...say, with Divvi's husband's personal care and with Joan's husband, listening to his anger. Then, ask the Neurologist if they have a better understanding of the finer points of the disease. (Divvi and Joan, I hope you are not offended because I used your DHs, but they are absolutey perfect examples of the behavior of AD, and would make perfect subjects for the doc's intervention.)
Post 7 under Assisted Living. A general explanation of surviving spouse keeping house etc. Several other posts follow and all of us have questions. Thank you.
Absolutely no offense taken. You are correct. Most of Sid's other doctors - Primary, urologist, podiatrist, cardiologist, etc. etc. etc. are CLUELESS. They tell him how they can't believe he has AD. However, his neurologist's mother had AD. He has been in the trenches, so to speak, and he has been in the AD field professionally for close to 40 years, so he is tuned right in to everything.
Just a quick note.. All those years that I have been talking with drs. about his extreme tiredness and lack of energy... almost always we have been told to be more active! Exercise! Get out and walk the dogs! One dr. wrote it on the precription pad "Walk every day". When we got back into the car after the appointment , my DH asked who wrote the note? And why? My pushing him to be more engaged and active was causing only frustration in both of us. I think that drs. preach more exercise and a good diet in all cases. Not a bad idea but also not much good is some cases. I try to let the disease set the course. If he is not in distress, then I let him be...
Anita - I also think we can only do so much but my concern with my dh is that when he quits moving he will be chair and bed bound. He also complains of extreme tiredness and can hardly get out of the car. I don't know what I will do with him when he does. Far as the sleeping all the time goes I am going to try and be thankful I have that instead of Joan's situation. No good answer. Good Luck.
Imohr, I agree with your concerns and that's why for so many years I really worked at keeping him more actice. Long before the official dx, I would look at him sleeping in his chair and wonder what he would be like as he got older. Of course ,back then I thought I really could just motivate him to do more. Unfortunately in the last few years , any effort to "push" him into doing more hurts his feelings. I think he hates being reminded of what he can't do. I agree there are real problems ahead no matter what we do. And you are so right about being thankful for what we have. Yes there are problems with my situation and yet I am thankful every day that at this point he is not in distress and not angry.
On the topic of whether to go to an ER, I think I should pass on to you a comment that a doctor friend made to me. He said that it is a cruelty to put a very elderly (or in the case of many here, EOAD loved ones) person in a situation where they may receive CPR. With older people, CPR will almost certainly break some ribs and they will be in a lot of pain. Older people often never heal from the broken ribs, so they are in constant pain for years. Their quality of life can be terrible because of this. With an AD patient, they may not be able to understand why they are in pain, or may not be able to express it.
Also, unlike TV shows, the statistics on survival when CPR is attempted are not good. I read recently that it works in only 10-11% of cases, and it's usually with younger people. NO ONE should have any thoughts that they "could' have or should have called 911 if something bad happens. It is NOT your fault, and is most likely in the best interest of your loved one.
My opinion about who is an appropriate candidate for resuscitation efforts certainly changed after that conversation. I would not want to be in constant pain every time I took a breath, and I would not want to inflict that on a loved one either.
Shanteuse, just to second what you said. My husband survived multiple CPR on a single day, which is why he has dementia and which is why I'm here typing this right now.
Starling, if you had it to do over, would you? Have you had any time since that happened that has been meaningful? I ask out of curiousity only....you don't have to answer if you don't want to do so. I'm trying to think about my future options. Just in case....
Regarding exercise: My husband broke his hip and had surgery over a year ago. A partial replacement. He is very unstable on his feet and walks very slowly. Ooooooh very very very very slow. Soooooooooooooooo slow. I think some of you understand what I'm saying. If we are walking together, I always get ahead of him. If I stop (to wait for him to catch up)...guess what? HE STOPS!
Talking a walk to the corner could take about an hour. I KNOW exercise would do HIM good, but I think I'm going to get a hired caregiver to take him out for a while now that our weather is getting so nice. I tried taking him to the mall with his transportable chair and he refused to sit in it.
So, he sits in his chair and dozes.... goes to the bedroom for his power nap....gets up, comes back to his chair and dozes. The more I read, the more I can appreciate that he is on this path instead of being up hiding things, having rages, pooping on the rug or running away. I am truly blessed and I needed this reminder. HIS AD took away his speech and he sleeps more than he is awake. I realize now how much worse it could be.
Nancy I can relate to everything you said except the hip surgery. Mine has spinal stenosis and he is also sooooooslow. On our drive today he got out of the car at the Nursery, Car Dealership and Aldi's. He could barely walk into the house.
I too feel very thankful mine dozes and sleeps a lot after reading about others problems.
Nancy and Lois, my husband can't talk and is dozing more of the time too. He gets agitated from 5 p.m. - 6 p.m. some days, and tries to leave the house (can't due to the key only dead bolts) then returns to his recliner. He no longer hides things - that phase has passed. He never has had rages, and I hope he won't. He can still walk and feed himself if I cut up his food. He walks behind me or arm in arm, and I think that is due to eye perception. He's gotten to where he feels for the toilet seat before sitting down, and for the mattress when getting into bed, as well as his recliner. My grandson does take him on a walk every day before lunch. That is his only exercise. I think our husbands are close to the same place....
Nancy, those are not his initials...but when you describe most of his problems, they are close to what Lois' husband and my husband are going through as well....
my Dh is also sleeping alot more all of a sudden. feeds himself if i cut it up or tries to cut it with a fork, walks alone ok so far, but has off/on days of getting to the bathroom ontime. he still gets the sensation and knows to get up sometimes too slow though. other times he just sleeps thru it altogether-he looks at mags and books but doesnt comprehend any words but can read some still. he know my name and his full name. and yesterday said, 'i love it here in texas"????? haha.. shocked the heck out of me, it comes and goes.
we are in similair parameters alot of us i agree. divvi
I thought my husband's behavior and symptoms were uniquely his, for several years, until last year when I went into the first Memory Care Facility. I would never have believed there could be a roomful of men who looked exactly like him, walked like him, and sounded like him. I had been saying, "He's really not that far along", ... while the Clinical Psychologist said, "Oh yes he is!!"
He's still living at home, and might live here always. But now I understand that he is, indeed, in a severe stage of Alzheimer's Disease and doesn't have that much further to go. I believe he will just sleep more and more until he never gets out of bed and will sleep his way into the hereafter. nancy
Mary, they never asked me. They did CPR the first time before I even arrived at the hospital while he was in Emergency. I really don't know how often it happened.
Would I have asked them to stop if I had had any idea of how often it was done? Only if I had also understood where it was all going to go. I didn't know enough to tell them to stop.