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Originally posted by: Mimi S.
Hi Don,
Hope the books help.
And glad you're seeing to your own mental health. That's so important.
The great thing about most support groups is that in general newbies are needy. They have problems they need help with. Then gradually as they gain more experience, they can share that experience with others. And of course, then another set of problems arise. So most people on this site are both gatherers of information and sharers.
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Originally posted by: Starling
Don, are you in the US? The reason I ask is that I'm not sure we are both using the words "Home Health Care" in the same way.
I have a home aide for my husband. I only started having her come in one morning a week a month ago. I am paying for it myself because we don't qualify for help with those payments by the state. If you are in the US, you need to call a different agency and talk to them.
I think you might also need to call hospice for an assessment. A month before I got my husband an aide I asked one of the local hospice agencies to come and do that. My husband is not falling on the floor unable to get up by himself. He is not wetting the bed. I don't even own a wheelchair for him. I was told he was close to needing their care, but not quite. Somehow I think your wife would qualify.
If you are in another country the rules would be different. But I've always been told that they bring hospice and aides in EARLIER in Canada and Great Britain.
If you are in the US, the first thing you need to do is find your County's Area Agency on Aging and ask them to visit you. They are the gateway to a lot of help, which you need.
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Originally posted by: Mimi S.
Thanks Staling,We need to publicize more the amount of help that is available from the Office of the Aging for those 60 and older. The advice is free. Often the help is on a sliding scale. They know the resources of the county and want to help.
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Originally posted by: Cathy J. M.
There are different kinds of in-home care. A few Medicare pays for, with pretty stiff requirements tho this may depend on where you live -- visits from a physical therapist, occupational therapist, or home health aide for bathing etc.
Hospice is another option; it might help just to get the initial evaluation. Even if your wife isn't eligible for some reason, I think the person who comes out to evaluate the situation might offer useful suggestions.
Another option is to hire in-home care. Because of the floor problem, she may need a caregiver with CNA training. Just check to be sure the CNA has special training in helping someone off the floor, AND in diabetes and Alzheimer's. Going through an agency costs about twice as much per hour, but if you can afford it, this could save you some time and energy. I'm guessing you're short on both right now.
Be sure to let her doctors know what's happening. Don't wait till her next appointments to let them know.
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Originally posted by: Ruth9
I am also paying for an aide because we don't qualify. And have been for several years now. I had talked to the agency on aging last fall. I didn't realize but she had put our name on a waiting list for this federal program for older caregivers. About a month ago I received a letter saying we were next for an aide, 4hrs weekly and we didn't have to qualify. I was very sceptical but it's working out great. You get to pick the home health care company and if they don't work out you can switch. You just have to get your name on the list.
Even if you know you don't qualify for any help, you need to explore all possibilties.
My DH is retired military. I even tried VA. Nothing.
Hope this helps.
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Originally posted by: DonM
Hi,
thanks for your kindness and advice. We are in the process of getting someone in the home for more assessment so we will see how that goes. Other than her muscle tone and weakness and her diabetes she is physically very healthy. When she was in the ER after one of the 911 calls, there was no medical reason to keep her in the hospital. I was hoping that they would be able to keep her for a few days for an assessment, mentally and physically, but there was no apparent reason for admission according to the ER Dr.
Hopefully we will get something started on Monday to get her into a PT and OT program, either in the home or outpatient, that will give her a bit more strength and ability so that she is not in danger of falling and so she can get herself up. (I am unable to assist her because of her weight, which also makes it harder for her to help herself.)
We are going to have to hire some kind of in home care even if it is respite care so I can get out of the house to do the things that I need to do. (My own physical exercise and psychological appointments.)
Keep us in your thoughts and prayers and thanks again for being here.
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Originally posted by: JAB
quote: I think she may be getting incontinent as she wet the bed last night. This is the first time that this has happened.
Don, that may just have been due to the fall and the stay in the ER, rather than a true onset of incontinence. My husband had a fall and spent a day in the Trauma Center and the next day in Urgent Care. He was totally incontinent for three days, then just dribbled a bit near the toilet for the next few days, and then was fine. Several months later, he had some problems that resulted in spending a day at Urgent Care, and he had another "accident", flooding the bathroom that night ... and then he was fine again.
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Originally posted by: jfkoc
quote: Originally posted by DonM:
Thanks to all of you for your kind and informative posts. I have been reading a lot and it does help to se others going through the same thing.
I will try to be more frequent here and hope to be able to contribute more from time to time as well.
You made me laugh. I am just now (after about a year) learning to let go of the screwy stuff. A far change from years of saying "what in the ----is the matter with you"? PROGRESS...thanks
My DW and I do enjoy going to Mariner's Baseball games and still have plans to go to Hawaii again after the first of the year. I am holding on to that as something to look forward to. The last trip was difficult for her but once we were there she did OK. She is in a wheelchair (4 back surgeries and in pain all the time) and can only walk very short distances. That part is not good, as exercise would help her Diabetes and the MCI or AD. (Still not sure what the Dr. wants to call it.) I have tried to get her to go to PT but she refuses and says it hurts too much. I am sure it does so I don't push much any more.
I alluded to the fact before that diet is difficult. I am the chief cook and bottle washer, as they say, but often she will not eat what I fix. I know from working with the dietitian at the Dr’s. Office what she should eat. I am sorry to say that I sometimes give her “comfort food” as it gives her some sense of joy in her rather joyless existence. If you asked her what her main problem was she would say her constant pain. I am not sure she would say anything about her memory loss. When we do talk about memory she says, “I worry about your memory. You get things so screwed up.” It is usually after she has convoluted or distorted some important facts about our children and their families and I try to straighten it out.
How do the rest of you deal with that? Do you try to lovingly and gently redirect and correct the facts or just let it go? Some things I can’t let go as they are detrimental to our children or have to do with upcoming events that she needs to be a part of. I will be interested to know what the rest of you have done. The difficult thing for us is that if I correct her she gets really angry. Sometimes her anger and rage are really hard to deal with. I keep telling myself that it is the disease and not her. Sometimes I have to just walk away and come back later. There has also been some physical expression of anger but nothing that I can’t deal with.
She was up most all of last night and is now asleep. (It is 3 in the afternoon) I hope I can wake her to get her on some sort of schedule again. That one is getting harder and harder.
Enough for now. I have to get the mail and pay the bills. Life goes on.
Peace and Blessings to all you wonderfully kind people.
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Originally posted by: DonM
My copy of The 36-Hour Day came and I am starting to read. I am glad I ordered it. I am sure I will find it helpful.
I am going to my psychologist for the second meeting today and that will be helpful for me as well.
My DW had a sleepy night and spent it on the couch in the family room. At least she was able to sleep and not awakened by her pain. I slept in the chair (My back and neck are paying the price today.) as I can not really leave her alone when she is sleeping. She has a tendency to fall or slip to the flood when she wakes up. Then is is very difficult for her to get up by herself.
I hope she will be OK while I go to my counseling session. At least she will be awake by then. She has had a few more problems with incontinence while she is sleeping and I am hoping that will pass.
Well back to my reading and then off to the appointment.
I hope you all are having a good day.
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Originally posted by: Mimi S.
Hi Don,
Thanks for keeping us in the loop.
Two ideas.
Doesn't sound as if you can let her sleep in the chair. sounds as though you have to get her to bed when you se her beginning to doze off.
Do you have a friend of hers who can come and sit while you're gone? Also sounds as though finding some one is a must.
And that means you will need to begin looking for someone that can come as respite, for you. At the beginning, once a week will be OK. But that will increase.
Do any of your children live nearby?
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Originally posted by: jfkoc
OK, this is crazy but can you get her to sleep on a mattress on the floor? Can you put an air mattress next to the bed/couch so she will not fall as far? If she questions can you say that her/your bed got broken and is getting fixed? Can you push the bed against a wall?
If she falls can you just make her comfortable until she wants to get up? Can she ring a bell for you when she is ready? When my mother got stuck in the tub she called me, I went right over, the water was already cold so she had been in there a while but she was in no hurry to get out. I do not remember how long I sat there while she chatted, perfectly content.
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Originally posted by: jfkoc
Additionally...go to any baby department and get water proof pads (made for cribs) to put under the sheet and get a waterproof mattress pad right away. Bed Bath & Beyond or similar will probably ship you one. We have a vacation home we rent out and all the mattresses are protected this way. Keep us posted.
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Originally posted by: Mimi S.
For tonight, look around for a large plastic bag for on top of the mattress.
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Originally posted by: Cathy J. M.
I posted a day or two ago about liking the Priva mattress pads. You get them shipped overnight from Amazon.com. They don't cover the whole mattress, just under one person. I have one under the bottom sheet on my partner's side of our double bed and have never gotten wet when she has an accident. They're supposed to hold 6 cups, as I recall, without any leakage.
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Originally posted by: DonM
quote: I posted a day or two ago about liking the Priva mattress pads. You get them shipped overnight from Amazon.com. They don't cover the whole mattress, just under one person. I have one under the bottom sheet on my partner's side of our double bed and have never gotten wet when she has an accident. They're supposed to hold 6 cups, as I recall, without any leakage
Thanks for all the suggestions. I have already purchased a waterproof pad and it is on the bed. I will look into the one mentioned above if the problem persists.
quote: Doesn't sound as if you can let her sleep in the chair. sounds as though you have to get her to bed when you see her beginning to doze off.
She slept quite comfortably on the couch. I was in the chair.
quote: Do you have a friend of hers who can come and sit while you're gone? Also sounds as though finding some one is a must.
And that means you will need to begin looking for someone that can come as respite, for you. At the beginning, once a week will be OK. But that will increase.
Do any of your children live nearby?
We have a daughter close buy but she is a single mom and works 5 -6 days a week. I am looking into respite care for times when i need it. So far i am able to be gone for short periods of time. I went today to my psychologist apt and was gone about 2 hours total and things were fine while I was gone.
Her Neuro apt is June 2 and i will let you all know what he says. We are working on Home Health care coming in or outpatient PT -OT.
Thanks again for all the suggestions.
More later.
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Originally posted by: DonM
Hi,
New information.
I took a list of "observations" to my DW's Neurologist the other day and his office just called me. He read the list and is very concerned and wants to start her on Aricept ASAP. I am going to go by the office later today and pick up a bag of samples. Her appointment is June 2. I am really impressed that he has taken this action even before he has seen her again. I am hoping the visit goes well.
She wanted to go to Starbucks with me yesterday so that was good. We had a nice time and a good visit with a friend there. She slept on the couch in the family room last evening because she did not wish to go upstairs. I used the baby monitor so i was able to get some, even if intermittent, sleep.
I am hoping this will be a good day.
I would appreciate any of you commenting on the use of Aricept especially at the beginning.
Thanks again for being here.
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Originally posted by: Mimi S.
Hi Don,
Mimi again. I can't remember what process of diagnosis your wife went through.
I and some others who post here frequently are against giving any medication until a full battery of tests are given and evaluated. Some things causing dementia are easily cured with vitamin shots. Others are more difficult, but a ton of Aricept would only delay finding the true cause.
There are some true dementias for which Aricept is not the best drug.
Aricept has side effects, some more troubling than others. I had to deal with two side effects. I've been on Aricept for over 3 1/2 years and that plus my Best Practices, have kept me slightly ahead of where I was upon diagnosis.
So I am glad your doctor responded to what you wrote. And I also hope that your wife had a complete physical, blood tests, brain scan and a neuro-psychological exam.
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Originally posted by: DonM
quote: I can't remember what process of diagnosis your wife went through.
I and some others who post here frequently are against giving any medication until a full battery of tests are given and evaluated. Some things causing dementia are easily cured with vitamin shots. Others are more difficult, but a ton of Aricept would only delay finding the true cause.
She has seen the Neurologist twice over the last year and 1/2. He did a full battery of tests, including a complete physical, blood test, brain scan and a neuro-psychological exam. His diagnosis at that time was MCI-not dementia. Things have deteriorated since then. He sees her again on the 2nd of June.
I appreciate your concern but I think he is being both careful and thorough. I will certainly ask him if he has ruled out all other causes, including Normal Pressure Hydrocephalus.
I will post what he says. thanks again.
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Originally posted by: Mimi S.
Thanks Don,
And that diagnosis of MCI vs. mild AD is a fuzzy one. Different doctors would decide one way or the other. And with his thoroughness, he probably already ruled out the hydrocephalus. The report on my MRI specifically mentioned it.
Then the next thing is to try what I call y Best Practices. And she may already be doing some, if not all.
1. meds.
2. Vigorous physical exercise.
3. Vigorous mental exercise
4. A lot of socialization.
5. Mediterranean Diet. I also take antioxidant supplements and Omega 3.
Here is a link of me. It's the left overs from "The Retirement Revolution" PBS broadcast that you can also find. The shot of me in a library setting is where I am conferring with a friend who is help[ing me edit a book about Rural Schools which is actually getting closer to publication. 
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Originally posted by: DonM
quote: Originally posted by Mimi S.:
Then the next thing is to try what I call y Best Practices. And she may already be doing some, if not all.
1. meds.
2. Vigorous physical exercise.
3. Vigorous mental exercise
4. A lot of socialization.
5. Mediterranean Diet. I also take antioxidant supplements and Omega 3.
Thanks for the reply. Her meds are all up to date and i monitor - control them as she can no longer remember what they are or what they are for.
Vigorous physical exercise. - This is a real problem as she has had 4 major back surgeries and is in constant pain and since it hurts to move she will do little or no exercise. She is in a wheelchair for any distance at all eg. more than 150 feet.
I try to get her to do mental exercise but it just confuses her at this point. She used to love crosswords but that will not work any more.
The diet is also problematic as she refuses to eat what I cook. Even using her old recipe's and making the same things is of no avail. Any suggestions would be helpful.
Thanks again for your suggestions and your help.
BTW I could not find the link. I am not sure where it went. Off into cyber-space I guess.
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Originally posted by: Mimi S.
Hi Do,
It's a challenge, for sure. Does she swim? There are also exercises that one can do seated. Many Aging Agencies do this.
Good luck!
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Originally posted by: Cathy J. M.
Don, you're making so much progress! It's wonderful that the neurologist is being so helpful. That strikes me as a very good sign.
I certainly think the Aricept is a good idea, but I'm one of the lucky caregivers whose partner showed noticeable improvement right away. Sometimes it's much harder to tell how much difference it's making.
My partner did have some nausea (tho no vomiting) as a side effect. She also lost her appetite. Anti-nausea wristbands eased the nausea, but the appetite loss was a problem since Aricept tends to cause weight loss even if the patient eats a normal amount. I remember crying in the grocery store as I looked for something, ANYTHING, that my partner might eat. (Mainly, as it turned out, it was pickles.)
After about three weeks I was about ready to stop, thinking I was really torturing the person I loved. A friend experienced in challenging treatments (I think from counseling women with breast cancer) urged me to keep giving the Aricept for at least another two or three weeks -- saying the side effects might go away by then. Sure enough, they disappeared -- appetite returned, no more nausea.
The neurologist probably suggested, as our doctor did, giving the Aricept in the morning -- as giving it at night can cause insomnia.
After about three months my partner's brain doc suggested increasing the dosage from 5 mg to 10. It was shortly after that, however, that she went to the geriatric psych unit for a week. The psychiatrist there added Namenda and pointed out that the Aricept might be contributing to my partner's hallucinations -- so we went back to 5 mg.
On other topics -- Alzheimer's can change the way foods taste, and many people need spicier or sweeter or saltier food than before. So that may be why your wife's old recipes don't appeal to her.
Best wishes for the Aricept -- I hope you see an immediate improvement!
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Originally posted by: judyb84
Don, my husband is 65 and was diagnosed a few months ago. Never thought I would have to deal with this at such a relatively young age. My heart goes out to you. Could you give me some idea of what to expect as time goes on. God be with you. judyb84
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Originally posted by: DonM
quote: Originally posted by judyb84:
Don, my husband is 65 and was diagnosed a few months ago. Never thought I would have to deal with this at such a relatively young age. My heart goes out to you. Could you give me some idea of what to expect as time goes on. God be with you. judyb84
Judy, I am so sorry to her about your husband. What stage is he, or did they say? One of the things I have learned here and by reading is that everyone's journey in this is different.
There are many great people here and suggestions on reading etc. If you have not already done so take full advantage of everyone's knowledge. I know it has already helped me a lot.
My DW has a couple of other complications, diabetes, chronic back pain (4 surgeries), overweight, every weakening muscle tone.
We are just starting the Aricept and I will keep everyone informed. Pray that the introduction of a new med will go smoothly!!
Keep in touch as I know it helps a lot and be sure to take care of yourself. Do you have family or other help close by?
I have to go cook dinner so more later. Again I am so sorry that you have to be going through all of this. May God Bless you with his Grace.
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Originally posted by: JAB
Judy, hi, welcome to the forum.
What to expect? Judy, we have a saying here: When you've seen one Alzheimer's patient ... you've seen one Alzheimer's patient.
No two patients are alike. There are descriptions of the "average" patient, if there is such a thing. And there are some good references for that, which I'll get to in a minute.
But first, I want to warn you: a relatively small percentage of Alzheimer's patients have a very rough journey. A relatively large percentage of our members are, unfortunately, dealing with the roughest. So you may read about some pretty bad situations here, but as you read, please keep in mind that your husband's journey is much more likely to be relatively gentle.
OK, references for you.
Since the diagnosis is pretty recent, you may find the First Steps article helpful:
http://alzheimers.boomja.com/C...rst-Steps-61311.html
Also, Jennifer Ghent-Fuller's article, "Understanding the Dementia Experience":
http://alzheimers.boomja.com/A...xperience-59731.html
And Coach Broyle's Playbook:
http://www.alzheimersplaybook.com/
The link for the free .pdf is in the upper right-hand corner of the page
You will often see us refer to the "stages" of Alzheimer's. The medical profession uses a three-stage system (mild, moderate, severe). We caregivers tend to use a seven-stage system, which you can read about at:
http://alzheimers.boomja.com/S...zheimer-s-26575.html
Books: The "bible" of AD is "The 36-Hour Day". It is a very good reference book, neatly indexed. It is a very dry read, however! The very best book I've found on caregiving for an AD patient is "Creating Moments of Joy" by Jolene Brackey. It's great -- full of very practical, simple advice on how to make our ADLOs happy -- and make us happy in the process.
http://www.enhancedmoments.com/
Click on "Products" -- it's the second item as you scroll down.
There are other things you can do to help slow down the course of this disease, including:
(1) Sticking as closely as you can to a Mediterranean diet (with wine and nuts), which has been shown to help prevent/delay the onset of AD, and also slow its progression. See:
http://alzheimers.infopop.cc/e...=124104521#124104521
http://alzheimers.boomja.com/A...ean-Diet-231673.html
Basically, it involves:
- High intake of vegetables, legumes, fruits, and cereals
- High intake of unsaturated fatty acids (mostly in the form of olive oil)
- Low intake of saturated fatty acids
- Moderately high intake of fish
- Low-to-moderate intake of dairy products (mostly cheese or yogurt)
- Low intake of meat and poultry
- A regular but moderate amount of ethanol, primarily in the form of wine and generally during meal
To that, I would add eating a quarter cup of nuts every day -- quite a few studies have found they're very good for you.
Also, olive oil is very good for salad dressings etc, but not so much so for cooking especially at higher temps. Use canola oil for that, or a mix of the two. (I've seen plenty of products that contain olive and canola oils.)
Avoid hydrogenated fats and trans fats like the plague.
(2) Lots of physical exercise ... there is quite a bit of evidence it can help prevent/delay onset.
(3) Lots of exercise for the brain -- activities that involve learning something new. I've seen some reports that learning new things coupled with using a computer can be particularly helpful.
(4) Socialization, doing things with friends and family.
(5) Plenty of rest. And do whatever you can do to minimize stress for her.
(6) NO SMOKING!!! and avoid air pollution as much as possible.
Take a look at this video, made about one of our members, "Mimi S.", who has AD:
http://www.youtube.com/watch?v=Q2w9LG3hMlU
She follows these guidelines, which she calls "Best Practices".
For advice and support and information on local services and programs that can help you, contact your local chapter of the Alz Assoc:
http://www.alz.org/apps/findus.asp
and your Area Agency on Aging:
http://www.n4a.org/about-n4a/?fa=aaa-title-VI
You'll probably have tons of questions. Please feel free to start your own threads, so we'll be more likely to see them. (Your post is kind of buried on this thread.) Use the "Start a new discussion or poll" link in the colored bar at the top of the page, select the only option ("Discussion") from the drop-down menu (it's there, honest, just very small and hard to see), and you're off and running.
Oh -- and if you're interested in looking into clinical trials and want help tracking down the ones that are recruiting in your area, let us know. There are some promising new drugs in the pipeline.
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Originally posted by: jfkoc
you could look into some art therapy...google "I remember better when I paint" It will start you thinking about the benefits.
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Originally posted by: Iris L.
quote: Originally posted by DonM:
The diet is also problematic as she refuses to eat what I cook. Even using her old recipe's and making the same things is of no avail. Any suggestions would be helpful.
Don, I don't know if you're looking for recipes or tips on feeding ADLOs, but here are links to two threads that might be helpful.
What to do you do about meals:
http://alzheimers.infopop.cc/e...52104903/m/850306833
and
http://alzheimers.infopop.cc/e...52104903/m/868300443
Iris L.
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Originally posted by: Johanna C.
Dear judyb84: Welcome to this wonderful Message Board. You will meet some marvelous people here and we are all about supporting one another.
If you look at the blue hyperlinks, you will find much good reading that can be helpful and answer your questions.
The two very best are, "Understanding the Dementia Experience" and "Coach Broyles Playbook". Both can be downloaded and printed off.
Coach Broyles was a football coach who cared for his wife throughout her dementia and his booklet is filled with excellent information and helpful advice.
Understanding The Dementia Experience is something you will want to read over and over as things progress as it covers the continuum from beginning to the last stages of the disease.
I also want to invite you to initiate a new Discussion of your very own. You are more or less "buried" in another thread and you will not get as many responses.
It can be a bit confusing when you first come here. Just go to the top of the page to the red bar where it says, "Start a New Discussion or Poll." Click on that.
A purple bar will appear and say, "Discussion" -click on that.
Two boxes will appear. Click on the smaller one and enter the title for your Discussion.
Then go to the larger box, click on that and begin writing. That is all there is to it.
Best wishes,
Johanna C.
Peer Volunteer
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Originally posted by: Starling
You've gotten some good advice for a beginner. I'm going to try to explain why you should look to certain books and organizations for information and help.
"Coach Broyles Playbook" was the first thing that I read that told me the truth of where this journey was going to take me. It was short, kind, and brutally honest. And all of that was what I needed.
"Understanding the Dementia Experience" will explain what is really going on in your LOs brain. It will help you understand and understanding will take care of a lot of the frustrations you have. Personally, I've found that the more I know the easier this journey is.
Everyone need access to local information. Your local County's Area Agency on Aging (which they might call something else) is the doorway to where the help you are going to need exists. It also controls any services that you are entitled to. I'm not entitled to any, but they have been to see me several times, and it has been worth it every time I've called them. This is a Federal program that is run locally.
The Alzheimer's Association also has a wealth of information that they will be glad to send you in addition to what is on this site. And when you need to talk to a real person right now there is a telephone hotline. I've called them in the middle of the night. You can too.
The most important thing you can do on this journey is take care of yourself. Please try to do that.
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Originally posted by: Mimi S.
Hi Judy84,
http://www.alz.org/pa/document...rams_only_5.5.10.pdf
This is a list of programs coming soon in the Greater PA Chapter. Perhaps you'll find something of interest within driving disance.
I think you live closer to Phiily, which is the Dewlaraw Valley Chapter. http://www.sjconference2010.ki...lt.asp?ievent=421145. You'll see the book, Creating Moments of Joy by Jolene Brackeylisted as the most favorite of many posters. She is to be the main speaker June 4. http://www.sjconference2010.ki...lt.asp?ievent=421145 If you put your zip code in Chapter below, you can get the # of your local office. You can call them for local support groups.
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Originally posted by: DonM
Posted May 24, 2010 01:08 AM
I don't really like to keep starting new threads but this is important. I will be posting it at the end of the others as well.
I will have to be brief as I am exhausted and need to get to bed. As many of you know my DW has gotten weaker and weaker over the last months. She has constant pain (4 back surgeries, is very inactive, diabetic, overweight, and AD just on Aricept.
Saturday evening I had to call my daughter for help getting her up and to the bathroom. Later that evening I could not get her out of a chair to go to the bathroom and then to bed. I sensed that there was something else wrong and called 911 for transport to the ER.
Not only was she so weak that she could not stand on her own but when the blood work was done it was discovered that her kidneys were only working at 10%. Needless to say they admitted her to the hospital.
It is now Sunday evening and I am home and ready to crash. I have only slept 2 hours in the last 48. The treatment plan at the moment is to address the kidney problem (The kidney function was fine one week ago when she was in the ER for general weakness.), assess the weakness and find a rehab facility for PT and OT, have further evaluation by her neurologist, and address a rather large blister/sore that has developed on her left heal.
Needless to say I am very worried and stressed but glad that I can get a nights sleep. I appreciate all of your concern and help here and ask for your prayer and good wishes.
I will post more as we get more information in the days ahead. For now I need to get some sleep. Thanks again for your care and concern.
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Originally posted by: Starling
First of all you did not start a new thread. Just a new posting. And that is what the forum is for, so there is no need to be sorry you wrote.
I don't know you or your wife, but at some point in the next few days you are going to need to decide whether or not you treat this newest disease. I've been online forums long enough to recognize a pattern, which may or may not be what you and your wife is experiencing.
The LO begins to do a lot of falling and needs help getting up and the caregiver can't do it themselves. Sometimes there is lots of physical activity. Hours of pacing, for example. Sometimes not. And then one or more body systems begins to fail.
In my opinion, you need a hospice evaluation before you do anything else. It is possible that what is currently wrong with your wife can't be fixed.
I am NOT saying she is dying because I am not there, I can't see your wife, and I'm not a nurse or doctor. I'm saying you need to have someone look at your situation who is not going to automatically try to "fix her." If she does not belong on hospice they won't accept her. If she does they allow a patient to die with dignity and out of pain.
It is important to remember that ALL of our LOs are actively dying and that the path they take when they are ready to go is quite different from the path other people with other diseases take. And the one your wife is on sounds pretty classic to me.
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