View unanswered posts | View active topics It is currently Tue Sep 23, 2014 8:48 am



Reply to topic  [ 12 posts ] 
 Elderly Husband Has LBD 
Author Message

Joined: Tue Aug 28, 2012 8:48 pm
Posts: 6
Post Elderly Husband Has LBD
He was evaluated by a neurologist in 2004 when he had a heart attack after knee replacement surgery. This is when he was started on Aricept. There's been so many changes since then. Namenda has also been added to his medications, 10 mg. twice a day. Now he spend most of his time in bed, preferring to sleep, although he does use a walker around the house. Oh yes, he gets up to eat at the table and feeds himself. He uses a wheel chair for doctor appointments. He is totally incontinent (both urinary and fecal) for about two years now. We have to take care of all the other daily living requirements. He has frequent hallucinations, mostly people and pets. They don't seem to bother him, except that the people don't talk to him. He lives at home; my son and I are his caregivers. I've been reading the LBD Forums for about two years now, and have found them very helpful. Thank you all!

Well, he also has Diabetes with peripheral neuropathy (probably accounts for his weakness), heart problems, and Multiple Myeloma. Yes, Multiple Myeloma. Two years ago his neurologist did a lot of tests, one of which showed an abnormal monoclonal globulin which indicates M. M. He was sent to an oncologist who has been following him. This doctor is recommending starting chemotherapy in July because the abnormal globulins are beginning to affect his kidney function. His blood test for Creatinine, drawn last week, has almost doubled in a month (from 1.8 mg/dL to 2.7 mg/dL). This theoretically puts him into Stage 4 Kidney Problems.

What do you do when your "loved-one" needs chemo? Our children think he should not be put through this. The chemo can put the Myeloma in remission (doesn't cure it!) so that his dementia can get worse? Yet, our family doctor says that he will require dialysis when he goes into kidney failure. His neurologist says that the chemo will probably affect his neuropathy, and he won't be able to leave his bed. I feel like we are between the frying pan and the flames.

It helps just to write all this. At least it can be put into print!

Thanks, Coral


Wed Jun 19, 2013 12:47 pm
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Elderly Husband Has LBD
First, welcome to the forum! So glad you found us.

Second: These are tough questions like a lot of us have faced and there are no easy answers. I guess I would first of all look at what his Advanced Directives indicate were his choices for prolonging life. Rest assured that, whatever decisions you make, they are made with love and considerable thought. And be sure that there will always be some detractors among family members and medical personnel. None of us here will judge you! God bless.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Wed Jun 19, 2013 3:36 pm
Profile

Joined: Mon Oct 01, 2012 11:24 pm
Posts: 15
Post Re: Elderly Husband Has LBD
Coral-

Thank you for reaching out to LBDA. I am very sorry to hear about your loved one. I do hope you the forum a place of support and comfort during this time. We thank you for sharing.

Yours in service,
Toy

_________________
LaToysa Scaife-Rooks, MPH
Lewy Body Dementia Association (LBDA)
Volunteer and Program Coordinator


Wed Jun 19, 2013 3:54 pm
Profile

Joined: Sat May 25, 2013 3:53 pm
Posts: 261
Post Re: Elderly Husband Has LBD
Welcome to the forum Coral! I think you've found a good place to write things down, bounce them off a few people and then make the decisions that feel right for your husband, you and your family. I think you've got the right idea - just writing things down sometimes helps you sort them out in your own head - I know that worked for me! Hang in there and keep writing!

_________________
Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Wed Jun 19, 2013 11:59 pm
Profile

Joined: Fri Mar 08, 2013 10:06 pm
Posts: 3
Location: Hoschton, GA
Post Re: Elderly Husband Has LBD
Writing them down works well for me too. So here goes. My dad has been in the hospital for two weeks, then in rehab for about 4 weeks. My mother and I take care of him together. I have to work but work from home. I have two sisters close by and they are very helpful but have children and husbands. I moved back home (Georgia) from Arizona where I had been for eight years.

I read the posts here and feel guilty feeling sorry for myself when I read about some peoples journey through this terrible disease. It does help me move from utter despair often and I appreciate that so much. But anyway here goes.

The rehab is discharging him this sat, June 22. We were told in the careplan meeting that he needed 24 hour care. Though he is progressing in rehab, his condition changes radically at least daily and now does not show "significant progress" to keep medicare and supplement paying the bill. There are no other assets and he qualified for Medicaid last week. My sisters and mother and I have been researching and visiting homes. We are told of "No male beds", waiting lists that take a year to get on the actual list and then there are 100 people on the list. It is an 80 mile round trip through Atlanta traffic to get there daily and we take turns visiting and being the advocate of the day. We all changed our lives around to make sure we Never had to send him to a home. He has been such a wonderful father to us and husband to my mother. Their 53 year anniversary is Sept. 24 of this year. Being with her while she grieves this slow horrible loss of her husband has been as grueling as any part of it for me. She handles it very well considering but her stateof mind also changes hourly a lot of the time.

UTI is what has wiped us out. We went to three metropolitan hospitals well known in our area and they never diagnosed a UTI. Even with me saying UTI everytime I saw a Dr. pass within earshot. Angry doctors, compassionate doctors, jackass doctors....you name it we talked with them all. Finally after a week and a half of CONSTANT psycho motor delirium for 24 hours a day. He was so weak he couldn't be left out of reach for a minute as the cycle of movement was constant on 10 second intervals. We called 911 and even taped the movement cycles and one doctor even laughed that I had bothered to tape it. Not a single one, polite or jackass, would look at it on my phone.

At the hospital he would go into a kind of catatonic state (naturally), I even took him out in the car riding and it put him to sleep for 10 minutes or so.

I am so afraid to bring him home. Some days he begs us to take him home but most days he doesn't seem to know or care where he is. Now we cannot even get him in a nursing home. I have wheels in motion for every option, home health service (35 hours per week) hospice evaluations, medicaid for nursing home (so I thought). We are actually talking about playing the card with the hospital to make them admit him to a room since he has no adequate care set up after discharge. It is private pay only for the nursing home arm of the rehab we are in. We decided tonight that bring him home is not an option. I feel terrible about having all these great people working to secure there part to set up home health etc.

Finally we are four highly intelligent women, with our hearts in the right place, clear on our objectives, and raised by the right man to be that way. We can't do it. But we will. Any ideas would be appreciated. If you guys even got this far. LOL I cannot sleep so I hope i helped someone else rest with my diatribe.

Now I feel better too.
Lisa


Thu Jun 20, 2013 1:39 am
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3369
Location: Vermont
Post Re: Elderly Husband Has LBD
Coral - as has already been suggested, reading his AD should help guide you. If he doesn't have one, or it isn't explicit enough these are questions I'd be asking myself and discussing with close family members:

Would my LO choose to suffer the continuing degenerating effects of LBD?
Would my LO choose to suffer the effects of treating multiple myeloma?
Would my LO choose to suffer the effects of dialysis?
What would be reasons for choosing to prolong his suffering?
For whose best interest is it to prolong the inevitable?

It is a tough place to be if your LO has not made it clear what his choices would be under these circumstances. I am hoping he's made it clear, which should making things somewhat easier for you, although this is not easy by any means. Sending you lots of positive thoughts and support. Please come back here often to vent, ask for support, whatever you need. Big hug, Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Fri Jun 21, 2013 8:00 am
Profile

Joined: Sat May 25, 2013 3:53 pm
Posts: 261
Post Re: Elderly Husband Has LBD
Hi Lisa,
It certainly sounds like you have covered all your bases and that is all you can do! Keep talking it through and writing down the options. I will add one thing - would your Dad want you all to wear yourselves out if he was still himself? The nursing home option is not always as bad as it initially seems. And I wouldn't let waiting lists scare you off the list - wait lists seem to change all the time. And lastly, if you spend all your energy driving and setting up caregiving you have none left to actually spend time with your Dad. Just a couple of thoughts. Hang in there!

_________________
Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Fri Jun 21, 2013 3:23 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3369
Location: Vermont
Post Re: Elderly Husband Has LBD
Lisa - can they actually release him from rehab with no place to go? Have you enlisted a social worker to try to help you find a suitable place where they take Medicaid patients? There are also some private social workers who specialize in the sort of help you need. I don't live anywhere near you, so I don't know who those folks are, but I'll bet you can do an internet search and/or go to the local area agency on aging for help. The good news is, he is in an area that must have lots of places to search. Perhaps smaller towns on the outskirts may be better options in terms of getting him a room at a SNF sooner??? Good luck, and come back often. There are lots of people out here to support you. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Fri Jun 21, 2013 4:49 pm
Profile

Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Elderly Husband Has LBD
Hi Lisa,

I am surprised that your father can be released with nowhere to go. Did I miss something, or don't you have a social worker involved in discharge planning?

But I am not so surprised about "no male beds." At the nursing home where my mother lives, I have been told that they will not accept male LBD patients (apparently due to past experiences with violent ones). Maybe you are encountering something similar.

Have you contacted the long term care ombudsman for Georgia? I found the web site: www.georgiaombudsman.org. I contacted the ombudsman for my state and found tremendous help.

Best of luck,

Julianne


Fri Jun 21, 2013 5:46 pm
Profile

Joined: Tue Aug 28, 2012 8:48 pm
Posts: 6
Post Re: Elderly Husband Has LBD
Lynn,

Thank you for the list of questions:
1. Would my LO choose to suffer the continuing degenerating effects of LBD?
2. Would my LO choose to suffer the effects of treating multiple myeloma?
3. Would my LO choose to suffer the effects of dialysis?
4. What would be reasons for choosing to prolong his suffering?
5. For whose best interest is it to prolong the inevitable?
I've taken the liberty of numbering them, because I need to try to answer them.

Thanks to all of you asking if my husband has a "Living Will", or whatever a legal document is called now expressing his last wishes. Yes, he does, but only because our family doctor went thru the questions with him during an office visit several years ago. I had tried to talk to my husband about this, with no success. He didn't want to even think about it. I was a Med Tech (back when we did procedures in the hospital's lab), and have a fairly good medical background. Husband will answer questions with "Ask Coral." For years now, I go to all his medical appointments, and listen carefully so I understand what is happening, because then he wouldn't try and now isn't able to understand. So, his "Living Will" is rather unspecific. I am his Healthcare Surogate, and as our family doctor says, I have to decide.

OK, questions 1, 2 and 3: NO! He isn't choosing any of this, but he is stuck with it. He isn't accepting any of it, but his interests and activities have shrunken to sleeping, dreams, hallucinations, and eating.
Questions 4: There is no reason to prolong it, but I guess it's a question of what is easiest for him, as well as affordable. Maybe the chemo for Myeloma isn't as bad as what I received twelve years ago. Hey, I'm still here, and it was worth it (altho it was difficult at the time). I think the feeling prevails in medicine that if the treatment is available, it should be used.
Question 5: It is inevitable! Maybe the question should be how to best manage the course of inevitability. It's not in the interest of his care givers. This is an awful job, especially the incontinence. Without the incontinence, life would be bearable, I think. I guard against my desire to be free of this burden, and it is a burden for my son as well as me. Of course, medicine is big business, and we have good medical insurance, but nothing for long term care.

Writing all this does help. I think, at this moment, probably chemo is the best choice, but I do fear what will happen.

Thanks to all of you, Coral


Sun Jun 23, 2013 6:22 pm
Profile

Joined: Tue Aug 28, 2012 8:48 pm
Posts: 6
Post Re: Elderly Husband Has LBD
Lisa,

My husband spent two months in rehab, after a "heart attack" turned out to be an arrhythmia problem. When the hospital asked us to choose a rehab facility, I found that several of them would not accept him because of his history of falling, typical LBD. But one did, and they labeled him a "shooting star" to watch for falls. Yes, he did fall several times during the stay. The physician(s) at the rehab changed his medicines (I was surprised). After he came home, we immediately took him to our family doctor who made changes in his medication (with the approval of his cardiologist), producing quite an improvement. Overall, I would not say that his time in rehab was productive. This is when the fecal incontinence began.

I'm wondering if your father has a family doctor that could help you? It is surprising how quickly we can see a specialist when our family doctor does the referral. He seems to be our best friend. I was wondering about the UTI. I read about this problem so often in these forums. A microscopic urinalysis should show blood cells (WBC &/or RBC), and they can culture for bacteria. It's done all the time - just ask what his last urinalysis showed. There can be latent, chronic bladder infections, and it's time to be referred to a urologist.

Good luck finding a nursing home. If your father has to go back to the hospital after his return home, maybe their social workers can do a better job locating an opening for him?

Wish I could help more than this, Coral


Sun Jun 23, 2013 6:49 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3369
Location: Vermont
Post Re: Elderly Husband Has LBD
For many doctors, "pulling out all the stops" no matter what the condition of the patient and long term prognosis are, is THE answer and the only answer. That philosophy often gets forced onto LOs as well as patients trying to make difficult decisions. Thankfully there are more doctors these days who have a more balanced approach to end of live issues and may be able to help you look at all aspects of medical interventions.

If you haven't already done so, I'd do some research on the pros and cons of prolonging life when a person has one or more terminal illnesses. There are many good articles out there, and there has been quite a bit of discussion on this forum about this very topic. It is a controversial topic, for sure, but getting various views and reading about various people's experiences may help you with your decisions.

I would have done anything (legal) to not have my dad suffer with this horrible disease for as long as he did. Medical interventions of any kind were totally out of the question unless it was a comfort issue. Watching a LO suffer when there is nothing anyone can do, and knowing that only death will release the person from there suffering is a difficult place to be. Knowing whether you are helping to keep the person "alive" for you or for them is a very important question to get straight in your own head. Sending you lots of positive thoughts and support tonight, Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Jun 24, 2013 8:01 pm
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 12 posts ] 

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by MaĆ«l Soucaze © 2010 phpBB.fr