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 Nursing home vs. in-home care 
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Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
Post Nursing home vs. in-home care
Friends --
My husband (73) was misdiagnosed for two years with Alz and then vascular dementia. Finally, late last year, received accurate dx at Mayo in Scottsdale -- LBD, early onset.

Three questions on which I'd really appreciate your candid feedback:

1. How do you deal with the panicked clutch of the stomach when you unexpectedly step out of the moment and recognize how bad this is going to get and you're not sure you're ready for it?

2. Most of the information I've found, even on this forum, focuses on the early stage challenges or the late stage horrors. Where can I learn more about the in-between stages? I know LBD progresses differently for everyone, but my questions are about the issues that are common in all cases. For example ... incontinence. Does the person go from being fully continent one day to fully incontinent the next? Or is it like poddy training in reverse ... gradually losing the ability to control bodily functions? Does language "fade" away or will it, one day, go from being merely troublesome to non-existent?

3. My husband is 73 and I am 50. I consult and write so I work from an office in my home. We have no children, his grown children are not really a part of our lives, and we have no close friends or relatives on this side of the country. I cannot imagine having to eventually move him to a nursing home or other facility. Is it realistic to think that 24/7 care at home can work? Has it worked for anyone on this list? Any idea of the cost difference between a nursing home and care at home?

And lastly, is there anybody else out there who wishes, like me, that this would go faster rather than go slower? It's killing me to watch Jerome struggle to remain engaged in life, and home, and self despite his heroically good humor. In the middle stages, will he be aware he is in the middle stages, or will, blessedly, he stop recognizing that he is changing?

We've been married 20 years and I've always been emotionally prepared for a long widowhood. Dementia, however, has blindsided both of us -- neither of us have had any experience with it in our families or among our friends. Any advice from those with longer experience about how to handle this period when you BOTH are aware of the rapidly progressing changes. How do you help your loved one cope with literally losing their mind?

Thank you for being out there somewhere and caring enough to contribute to those of us coming behind you, so to speak ...
Renata (and Jerome)


Sun Feb 18, 2007 4:44 am
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Joined: Sat Oct 28, 2006 5:34 pm
Posts: 40
Location: Ontario Canada
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Hi Renata:

I think perhaps I can speak to some of your concerns as my Dad appears to be in the middle stages of LBD.
Dad's incontinence problems came on gradually. At first we figured it was just a natural aging thing or perhaps enlarged prostate-frequents urge, little time between when the urge hit and his ability to make it to the bathroom, up many times during the night etc. Even after the hip surgery that threw him full-force into LBD, he still had the wherewithall to know he HAD to "go", just the inability to hold it at all. Now of course he just "goes" and recognizes it after the fact and shows a lot of the same reactions a child in a dirty diaper would - wiggling, agitated, plucking at his clothing etc.
Dad's ability to communicate with words is gradually leaving him. He will (on his good days) be able to form sentences, but often forgets a word or uses and incorrect word - he can recognize this fact and tries to correct himself. On his "bad" days he will often string a line of nonsense words together and cannot focus on completing a thought. He doesn't consciously acknowledge that he can't make himself understood, but he will show agitation by plucking at his cliothes or pulling his moustache, so we know he is frustrated.
Early on in the disease he was often paranoid and had hallucinations and was extremely frightened and angry, but know he is much calmer and seems to have accepted his limitations for the most part.
He used to be able to walk for miles, but his gait became shuffling and there were a lot of falls. Unfortunately now he has lost the ability to stand or move his legs in a walking motion so he has been confined to a wheelchair. Funny thing - he doesn't know he can't walk anymore and always tells me how he went here or there - he is comfortable with this delusion.
Dad can still eat by himself, although he now wears an apron and his table manners have reverted to those of a child.
For me and my siblings the Early part of the Disease was horrifying - this middle stage although challenging is actually easier to handle. Who knows how long it will last? Every case is unique. We are not looking forward to the End stages, but are preparing ourselves for that eventuality.
I have found that taking one day at a time and not looking too far down the road is the only way to stay sane and focussed. This was a hard lesson as I am a "fixer" and often foolishly believe if I read enough, talk enough and push and pull hard enough I can accomplish things by sheer force of will. This disease has taught me otherwise.
Good luck to you and Jerome.

_________________
"Im pedalling as fast as I can!"


Sun Feb 18, 2007 9:24 am
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Dear Raffcons,
1. Planning is a great thing and can work for most of us in our everyday lives but it can't really work in LBD, with this you must take one day at a time and fix only one thing at a time, for me the more upset I became with things in LBD it was really a set back because I too am a fixer of sorts and just "knew" I could fix this but the truth of the matter I couldn't no matter how hard I tried.

2.Stages, there really are none to speak of because the illness is so different to so many people and I believe is the hard part. Every person experiences things in a different "stage". I will say in what I consider the next stage for us my husband calmed down and wasn't as agitated as he was more in the beginning. When he became incontinent it was like a child having an accident once in a while at night time I used a condom cath to help with constant getting up 20 times a night and that was really done for me out of exhaustion, it worked for us! I really don't think they lose the abitlity I think they lose the message center that tells them they need to go........
Language, for us.... my husband started talking very low and at the time I thought it was me going deaf and as time went on the words started to jumble but much depended on how alert he was, how agitated he was, and what meds he had taken, with LBD there is often a trade off with the meds being it helps one thing but messes with another and sometimes that is their speech.

3. You ask if anyone out there wishes the illness would go faster, let me tell you many many people wish for the very same thing I can remember when the day was long and hard in lewy land I would go to bed at night and Pray to God to not put us through one more day of it. So there should be no guilt on your part you are human...
I took care of my husband at home I didn't have much choice, we were comfortable money wise but just a bit more than services would allow for us to get any help, I did try a companion for my husband that did not work out the woman that they sent was like a "biker chic", the only thing she did was sit with him, she could'nt take him to the bathroom or if he had an accident could'nt clean him up and honestly it was a waste of money, so what I did was hire someone to clean for us and I took care of my husband and in later parts of LBD we went on hospice and that was the last months and thats when I finally was able to have some relief, I was lucky to have my children who helped when they could with shopping and errands and things having to do with my son who was/is still at home at the age of 15yrs old.
You ask how do you handle all of this well as I said above, one day at a time.
Another thing I found interesting was yes my husband was confused much of the time but he did know who we all were right up until the end yes he did mix us up sometimes but for the most part he knew, when our son would walk in the room his eyes would light up, some of the testy momets were more delusional that forgetting who we were.
Good luck on your road to Lewy........





Quote:
1. How do you deal with the panicked clutch of the stomach when you unexpectedly step out of the moment and recognize how bad this is going to get and you're not sure you're ready for it?

2. Most of the information I've found, even on this forum, focuses on the early stage challenges or the late stage horrors. Where can I learn more about the in-between stages? I know LBD progresses differently for everyone, but my questions are about the issues that are common in all cases. For example ... incontinence. Does the person go from being fully continent one day to fully incontinent the next? Or is it like poddy training in reverse ... gradually losing the ability to control bodily functions? Does language "fade" away or will it, one day, go from being merely troublesome to non-existent?

3. My husband is 73 and I am 50. I consult and write so I work from an office in my home. We have no children, his grown children are not really a part of our lives, and we have no close friends or relatives on this side of the country. I cannot imagine having to eventually move him to a nursing home or other facility. Is it realistic to think that 24/7 care at home can work? Has it worked for anyone on this list? Any idea of the cost difference between a nursing home and care at home?

And lastly, is there anybody else out there who wishes, like me, that this would go faster rather than go slower? It's killing me to watch Jerome struggle to remain engaged in life, and home, and self despite his heroically good humor. In the middle stages, will he be aware he is in the middle stages, or will, blessedly, he stop recognizing that he is changing?

We've been married 20 years and I've always been emotionally prepared for a long widowhood. Dementia, however, has blindsided both of us -- neither of us have had any experience with it in our families or among our friends. Any advice from those with longer experience about how to handle this period when you BOTH are aware of the rapidly progressing changes. How do you help your loved one cope with literally losing their mind?



Sun Feb 18, 2007 10:10 am

Joined: Fri Jan 26, 2007 2:29 pm
Posts: 57
Location: Wake Forest, NC
Post 
Renata,
wow I can tell you are going in circles. Take a deep breath and relax. Enjoy the time now while he is still mobile. Keep everything "normal". My mother in law came to live with us in August was in early stage I think, She was not diagoinsed until January this year. Jackie needed help but could still do alot by herself. My mom and I care for her during the day we would bring her every where with us.
Now We only take JAckie out to go to the doctors. JAckie can not walk with out her leggs becoming jello and falling to the floor.
When JAckie came to us she was already wearing disposable underwear. But it was a more gradual loss of control. having bowel movements is now getting to be a big issue here at home. Has a very hard time making it to the bathroom.
Lanuage has also been an issue. She was doing well when she came to us sometimes when she was tired she would mess up, then we noticed that she
stopped talkling only about 3-4 weeks ago, mostly sits uses her eyes to yes or no. once in awhile she will try and talk but it is real hard to understand. Yet while at night she can talk just fine instead of sleeping. She will talk through out the night.
I have been also tring to get a list of stages but with no luck. also looking for what ahead of us.
go to the Alzheimer association in your County I heard they can give you lots of information. I plann on doing that Monday.

I still have young children at home 13 and 16 year olds, so we are planning to put JAckie in a nursing home. I have to consider the best for my children. It is impossilbe to give JAckie a bath any more. We have a bathtub and she can't pick up her feet enough to get into and out of the bath anymore.

Most days all JAckie does is sleep 19-20 hours out of the day. So putting her in nursing home seems to be ok for us. she will be a 3 minute drive from our house and plan on being there many times throughout the day. Go with the flow things seem to change weekly with JAckie.

_________________
Phyllis
taking care of Jackie 74 years old mother -in-law


Sun Feb 18, 2007 6:02 pm
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Joined: Fri Feb 16, 2007 6:13 pm
Posts: 102
Location: Fayetteville, AR
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Dear Ranata,

I am new to understanding LBD, as I have only recently been diagnosed with early onset dementia, possibly LBD. I am 40 years old and have a loving wife and four young children. I don't feel that I have anything to offer for most of your questions, but I do want to address your first question about how to cope with the sudden feelings of panic.

I am a former pastor and have advanced training in pastoral counseling and hospital chaplaincy, so that's the angle of my approach. First, I'd highly recommend that you see a professional counselor. They not only listen without judgment, but they also can offer you some very specific ways of dealing with anxiety and panic attacks. Such anxiety feels overwhelming, even life-threatening, but it is manageable with training. These forums are great, but nobody here can help you the way that a professional counselor can by meeting with you face to face and guiding you through various techniques for managing fear, anxiety and panic.

Second, I'd recommend that you find a local support group. I think one dealing with Alzheimer's and other dementias would be best, but if such a group is not available, there are other kinds of groups that could help. A grief support group might help, for you are certainly beginning to grieve current losses and anticipated losses. Check with your local hospital, hospice, crisis center, etc. There is usually help available.

Third, I'd recommend that you seek out spiritual help -- a trusted pastor, priest, rabbi or other trained clergy person within a religious tradition you feel comfortable with. This may or may not be important to you, and that's ok. But if you are dealing with issues such as "Why is God letting this happen?" or death and afterlife issues, a trusted spiritual adviser could be a great comfort.

Fourth, draw strength from others. Let other people care for you while you care for your loved one.

And finally, draw strength from within you. Yes, you are going through a horrible tragedy. But you will get through. You are endowed with a spark of the Divine within you. You are made of tough stuff, for the spirit survives even the worst of calamities. And it may be that even if you don't feel tough enough, a higher power may stand with you.

Now, I need to re-read what I wrote as though I wrote it to myself, because I, along with everyone else on these forums, certainly have periods of doubt and fear and anxiety and loss of faith. I can't make it alone, and neither can you.

Randy Graves


Wed Feb 21, 2007 1:10 pm
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Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
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Thank you all of you who have taken the time to respond. Started with a new neurologist this week who believes Jerome has LBD AND Alzheimer's, so has ordered a PET scan. Anything I should know about what it means when someone has a dual diagnosis? Does it have any bearing on speed of progression, uniwue symptoms, etc.? Thank you ...
Renata


Sun Mar 18, 2007 8:51 pm
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Joined: Tue Jun 12, 2007 2:11 am
Posts: 16
Location: Norco, Ca
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We had to put my grandma in a nursing home lastweek. I think she is mad at us for doing that. She does not understand that we can not take care of her at home. She keeps on saying I want to go home. Sometimes she want even talk to us when we go visit her. She has alot of friends that come buy and visit her. When they come she really opens up to them. I guess as long as she is talking to her friend or someone that is good.

Heather


Mon Jul 02, 2007 6:00 pm
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