caught totally off guard

[Kath833181]

Hello, I am new. For about the last 7 years... my dad has been a bit "off" we suspected that he had something wrong with him but had no clue what. He had no personality but was otherwise wonderful. He could read, drive, do chores around the house. He is 77 now. He always got 21 or more on that tests they have for AH.

This January he got the shingles and it has been a rapid roll down hill, and I now believe -- all along -- it has been dementia. But the thing is that it has gotten so horrible in just a few months. He had seizures, he has shaking, and he can't even recognize me sometimes. This week he starting having "accidents" which I hope are related to diarerra. He also has trouble getting up and walking. Something he never had a problem with before. He can shave and get dressed but he has to be prompted to do it and then helped. He also doesn't seem to eat as much as before. And when he chews it is like he has forgotten what to do. But he does eat.

We are hoping we can get a few more months. My dad was hospitalized twice in 3 months for weeks or more. One time for a rash, one time for seizures, and one time we don't know. Each time he came back totally screwed up -- but did seem to get better after a return to routine. In the hospital an MRI showed a severe shrinking of the fronttemporable lobe.

Needless to say we are caught totally off guard. My mom can't take care of him that well and I work so I can only do so much. We have home health care insurance, up to a good amount.. and I am consulting with a lawyer this week to determine if we can get him into a nursing home on medicare if need be. Although I would prefer to keep him at home.

THere is a visiting nurse who I hope will help. My questions
(1) can we get someone to take care of him at home? Full time part time ? Who? I feel we need at least 6 months to make all the arrangements for a nursing home.
(2) Should I now start applying to nursing homes? Do they have waiting lists?

[Maks]

Kath,

My father has dementia. I'd like to answer your questions using my dad's situation as my guide. It sounds as if your father's condition is deteriorating rather quickly. With his health failing, you should consider the nursing home route. Most communities in the U.S. have a chapter of the Alzheimer's Association near. Call them and they will guide you to the homes that provide the special care that dementia patients require. When you find the facility that you feel most comfortable with, and they have the space, you will be surprised how quickly they can move him in.
The one reality that can be hard for the family of a dementia patients to except is eventually the patient gets no benefit from being in their home environment.
I hope this helps. I would be happy to share any other thoughts with you. Good luck and may you find a few moments of peace during this time.
Steve

[Kath833181]

Thanks Steve,
It is 3 days post release and my dad was a lot better today. No accident and he ate pretty well. I am not kidding myself. I think we might get 6 more months. But I am crossing my fingers that the return to routine has helped. I was thinking maybe also the lack of sleep was a problem. I know in the hospital he got NO sleep and after 8 days of very little sleep I might be a bit delerious also.

How do people afford the nursing home? I mean I know that medicare will pay for it but don't you have to "spend down" assets, and also don't they put a lien on the family home? Does anyone have any experience with financing a nursing home when you don't have insurance? People have told me that unless you are rich often medicare will waive some of the lien.

I am going to see a lawyer this week, I am a lawyer although not elder care, so some of this will be answered.

How long does it take to get into a nursing home? Can you go on a waiting list and if your love one doesn't need it at the time can you pass and still stay on the list?

I will check the alzhimers association. Thanks.

[Beginning]

All you can do is take it a day at a time, and learn as much as possible to help your parents. I'm also a lawyer but I work in an area that is completely useless for our family. We paid for 1-1/2 hour with an Eldercare lawyer to learn as much as possible when my husband was diagnosed with early onset Alzheimers. We got lots of information on how Medicare works in our state. I also took a CLE class on Elder Law, which was very helpful.

I've discovered that there are lots of wonderful people who can help with this horrible disease. If you can find an Alzheimers' Center through a Senior Assn. or hospital (your father's doctor/neurologist should be able to point you in the right direction), they will have lots of resources & information. There are lots of books that can be helpful (I liked Alzheimers for Dummies). In our case, the only resource that I haven't been able to find is one for our teens & preteen. There's very little help for kids whose parent is ill.

You will be surprised at the number of people who will come forward with prayers and support for you, whose own families have been touched by this disease. I have found the posters on this board (particularly SnowyLynn, whose postings are always helpful) to be a great resource too. As the days go by, you will also be amazed at your own resourcefulness. Your strength and courage during this difficult time are gifts from your parents, that will let you help them now.

[Maks]

Kath,

Great to hear your dad is doing better. If I may ask, have you looked at the meds he is taking to make sure there are no contraindications? You would be surprised at how often a patient is prescribed meds that may not fit well with their other meds and make things worse. One reason for this, coming from personal experience, is multiple doctors prescribing meds for a patient and not knowing what the other doc is doing. And if you are using different pharmacies, they won't have all the data necessary to screen for drug interaction. Just a thought I wanted to share.
My experience for placing my dad in a nursing home included working with an elder attorney who formulated a plan to spend my dad's small savings down to the point he would qualify for state medicaid. Part of the spend down included paying for a portion of nursing home services from my dad's money. When he was approved for Medicaid, the remaining portion of what was owed to the nursing home was paid retroactively to the date of when his medicaid application was submitted.
I'm in Wash St, and found the process to be smooth, especially with the help of a qualified attorney.
When I was applying for my dad's placement in a nursing home, I needed to provide proof of payment ability. This requirement was met by providing a copy of the entire medicaid application package submitted to the state.
Since I don't know what state you are in, I don't know if you have medicaid or a similar state-ran program. In Wash St, not all nursing facilities except medicaid patients, or they only have a limited number of beds for them.
Your visit with the elder care attorney this week will answer many of your questions and with that a better sense of which direction you will want to head. (Don't worry about a lien on the family home. That can't happen.)
If you care, share with us what you find. Good luck and remember to keep asking questions!!

Steve