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Kath833181 04-19-2004 03:57 AM

caught totally off guard
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 04-20-2004 10:13 AM

Re: caught totally off guard

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.

Kath833181 04-20-2004 06:03 PM

Re: caught totally off guard
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 04-20-2004 07:32 PM

Re: caught totally off guard
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 04-21-2004 08:47 AM

Re: caught totally off guard

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!!


SnowyLynne63 04-21-2004 11:24 AM

Re: caught totally off guard
Hopefully you have POA's in hand,plus copies to give Drs,hosp.NH.
Check out the meds.he takes.What IS he on?Some Drs.tend to overload on medications.There is much information on the net.I go to other sites to help others.
Diversity is great.............

Kath833181 04-21-2004 05:15 PM

Re: caught totally off guard
Thank you all. Day two without an accident. I am in Massachusetts. I am a personal injury / land use attorney so.. you see I am not up on elder care. Some of the people in my office know what they are doing "kind of" so I decided to go to someone who I attended an Elder care class with. Ironically the month after the class all the regs changed or I would have attempted it myself.

My dad has had a massive drug issue. In January he had a seizure and went into the hospital. The drugs have been added / changed and pulled off of many times.

Currently he is on
Lasix (blood presure)
An SSRI, generic prosac
an Anti Seizure Drug
And a heartburn drug.
and a steriod for a nasty rash.

2 weeks ago he was totally different drugs and Aracept. The doctor will see him Monday so he plans to attempt the same type of drug just another one, he fears the Aracept caused the rash. Because of the rash all the drugs were changed and abruptly stopped.

Actually in MA a lien on the home can happen. I found it funny last week to find on "yahoo" that the highest court in New Mexico upheld such a lien. That is common practice here. Although the home is NOT part of the inital application for medicare, Mass Health can put a lien on the home and they will want to be repaid when the home is sold. Subject to a lot of exceptions but... I work in Personal injury and a lot of times Mass Health (same agency ) will waive the lien or reduce it if the client gets a poor or low settlement.

I do have a power of attorney for my dad. But it was signed recently.

Thanks all you have been a big help.

SnowyLynne63 04-21-2004 08:53 PM

Re: caught totally off guard
The "36 hour Day" is the Alzheimer bible.Aricept does not as a rule cause rashes,BUT it can cause diareah.Reminyl is a good med.for Alzheimer's too.I've been on it for 2 years.............

Kath833181 04-24-2004 07:48 AM

Re: caught totally off guard
Well, I went to the attorney and found her just as useless as the doctors. It was too depressing. My firm does *some* estate planning and when we do, no matter what the clients needs are, we have a list of things we pitch them. I showed up to the attorney with 5 or 6 of the things necessary (such as POA, Health Proxy, and HIPPA release) and all she wanted to do was fill out the "package." Since I brought almost everything she needed she kept trying to pitch us new wills. While a nice thought, not what we really need. She also tried to "repitch" us the things I had already done. For instance, she thought my 5 page power of attorney wasn't quite broad enough so she wanted us to execute hers at $200.00 per pop. I already have a homestead on the house but she insisted that we needed more. She wanted a new HIPPA release although that release is the one I acutally use in my PI practice. What was I thinking?

I have decided to do most of it myself with help from my firmmates. I am also going to ask around and see if they know attorneys who will give me what I need and not what they need.

She did indicate to us that we can put my dad into a nursing home and then apply to medicaid, and get repaid if we then get medicaid. She also told us what we needed to put together for the medicaid application and she said that the application wasn't bad if you have everything. So I think I can get it all. She also told us that if a lien was placed on the house, it wouldn't be for the private rate, 75K per year. It would be only what medicare actually paid, less my dad's Social Security. So likely more like 45 K per year.

Also, frustratingly, she kept telling us that much legal is dependant on my dad's doctor signing off on things. That is very frustrating because my dads doctor is IMHO a dolt. He keeps saying my dad is fine. I am looking for a gerentologist. -- I just hope I get a good doctor.

BTW my dad hasn't had an accident in a week. But now he hasn't had a bowel movement in a week, but he has been taking immodium AD. He has a doctor appointment on Monday. Thanks all.

SnowyLynne63 04-24-2004 04:54 PM

Re: caught totally off guard
YOU are paying a lawyer for what YOU want,not what he wants you to have.Stick to yer guns.............

Harry 04-25-2004 08:04 AM

Re: caught totally off guard
I have read all the posts on this thread with great interest. I recently read a book by Dr Barry Sears --" The Omega Rx Zone" The Miracle of the New High-Dose Fish Oil--

Sears states that some people with dementia, Alzheimer's and other chronic diseases have made remarkable progress and even reversed some chronic diseases taking Omega 3 fish oil. I think it a very worthwhile book to read and consider Dr Sears suggestions!!! Barry Sears is the author of "The Zone" a popular diet program. I have found him to be a reliable author and not some off the wall researcher.

There is a quote on the back cover by Bill Cosby, "If you do what Dr Sears recommends, you'll improve your health and well-being ... you'll also notice how much easier it is to connect the dots."

God Bless---Harry

SnowyLynne63 04-25-2004 09:00 AM

Re: caught totally off guard
It may improve the health some in a person with Alzheimer's,but will not cure it...........

Kath833181 04-26-2004 05:04 PM

Re: caught totally off guard
Apparently while my dad was in the hospital he got a horrific bed sore. Is this normal? I am about ready to go ape on the hospital.

Does anyone have any experience with this? The doctor says it isn't that bad, but I suspect he is covering a bit for the hospital. Don't people sue nursing homes over this kind of thing? And this is a hospital!

skylan 04-27-2004 04:49 AM

Re: caught totally off guard
It sounds like your dad is on too many meds, and I knew of a patient on Aricept that went totally beserk. The doctors didn't believe it, so her husband said stop giving it to her, and sure enough she felt alot better. Please check into the medicine.

Maks 04-27-2004 03:43 PM

Re: caught totally off guard
Has your dad had a BM yet? I ask because this sounds just like my dad's situation. He finally had to go to the hospital due to a bowel blockage. I hope things are going better for you. Steve

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