Nursing Home not always an option (father, facility, dementia, family)

[springazure]

Originally Posted by texdav

I think you assume too much when you assume that people here assume that they will die from a sudden heart atack. You assume also that they have not had relatives that had similar deabiltaing diseases.But you also assume that all facities to care for people are the same as you experienced.Likely the worse facities are those that the patient goes there on medicaid and even they are not the same from one to the other.

I'm referring to the number of Baby Boomers I've talked to in Real Life. I am truly amazed how many have never set foot in a Nursing Home, or they had a relative with Dementia, therefore they AVOIDED that person (hence they are ignorant about many aspects surrounding Dementia). And since I live in rural boonhick smalltown America, our choices of Nursing Homes are very limited. (gossip travels fast )

[GLS]

With great sensitivity to the OP's personal experience, try multiplying this by 100 or 150 patients.(Federal law says we have to call them "residents". Would you want to live here?) I have had the priviledge over the years of working with the Nurses, CNAs, Occupational Therapists, etc. that care for the elderly doomed to spend their final years in a long-term care facility. With the exception of a few "bad apples", which we try diligently to weed out, the staff are heros in offering compassion and the highest quality of healthcare with minimal resources.

If you are one of the unfortunate family members with a relative in a Nursing home, continue to be a strong advocate for improved care. Visit as often as you can, understand the Care Plan, maintain contact with the physician, and always ask questions about the rationale for therapeutic decisions. However, before you are hypercritical of staff, put try to put yourself in their role, and the emotional stress they carry home to their own families on a daily basis.

[superk]

To the OP, as a former caregiver, I completely sympathize with what you went through, especially having to deal with dementia. I'm curious, since you stated that you quit your job, how prepared you feel NOW for your own retirement? Are you now having to either catch-up, or start all over again, to reach a point where you think you might be able to retire comfortably. Also, I'd like to know, if you quit your job, how exactly did you pay for both of your housing/medical/food/utilities/transportation/etc.?

[Robyn55]

Originally Posted by Gandalara

And for those that think this may be affecting their family, there's a book you can get from the library. 'A Caregiver's Guide to Lewy Body Dementia', by Helen Buell Whitworth and Jim Whitworth. There's also a website.

I have no affiliation with the above.

And just FWIW - it isn't necessarily a disease of old age. And we hear more about it now because - in the past - it was frequently misdiagnosed as Alzheimer's or Parkinson's disease. One of my best friend's husbands got it when he was a little over 50. He died at age 56. He couldn't go into a skilled nursing facility here because the minimum age for men was 65. His wife took care of him pretty full time for about 4 years with the aid of a CNA who came to the house. Curiously - our next door neighbor's husband had and died from the same disease (when he was about 60). Robyn

[springazure]

Originally Posted by superk

To the OP, as a former caregiver, I completely sympathize with what you went through, especially having to deal with dementia. I'm curious, since you stated that you quit your job, how prepared you feel NOW for your own retirement? Are you now having to either catch-up, or start all over again, to reach a point where you think you might be able to retire comfortably. Also, I'd like to know, if you quit your job, how exactly did you pay for both of your housing/medical/food/utilities/transportation/etc.?

The ONLY thing I got going for me right now is that my house and car are 100% paid for. I no longer have a Savings Acct or NOTHING to consider a "retirement" plan.

I'm fortunate that I'm in my late 40's so I got time to try to do something about that, but I already know it won't be enough.

When I moved my mother in with me and quit my job, I was fortunate that my house/car were paid for. I also had zero debt. Mother's money paid for the monthly utilities, groceries, vehicle/house insurance, gas, etc. I had minimal savings at the time, and spent my savings on the minor expenses I had (such as buying a new pair of shoes) I let her money pay for my occasional chiropractor because lifting her is what knocked my back out of whack.

There was a time while giving the dog a bath in the tub, I slipped on the wet floor. My foot SLAMMED into the tub. I heard the cracks. I had zero medical insurance, so the chiropractor was kind enough to X-ray my foot for $25. I had 5 hairline fractures! What did I do??? Simple... I suffered through it! It healed. My only problem is I can't wear high healed shoes. I have to be much more fussy about footwear now. (and I can predict when a storm is coming LOL)

[springazure]

Originally Posted by GLS

With great sensitivity to the OP's personal experience, try multiplying this by 100 or 150 patients.(Federal law says we have to call them "residents". Would you want to live here?) I have had the priviledge over the years of working with the Nurses, CNAs, Occupational Therapists, etc. that care for the elderly doomed to spend their final years in a long-term care facility. With the exception of a few "bad apples", which we try diligently to weed out, the staff are heros in offering compassion and the highest quality of healthcare with minimal resources.

If you are one of the unfortunate family members with a relative in a Nursing home, continue to be a strong advocate for improved care. Visit as often as you can, understand the Care Plan, maintain contact with the physician, and always ask questions about the rationale for therapeutic decisions. However, before you are hypercritical of staff, put try to put yourself in their role, and the emotional stress they carry home to their own families on a daily basis.

I completely understand what you are saying. I used to work the kitchen of a Nursing Home. That was 25 yrs ago. Unfortunately, I remember some of those CNA's and how they were towards the more combative residents.

2 of my cousins also used to be CNA's of Nursing Homes. They are also familiar with rotten stories.

The Nursing Homes in my local region... those CNA's are barely getting paid above minimum wage.

And the private pay Nursing team I hired.... every one of those gals had previous Nursing Home experience. It was important to me that they have the necessary Dementia end-of-life experience. Unfortunately.... during that 6 wk period, one of the Nursing Homes made Front page headlines. Some janitor %$#@ was sexually assaulting the residents.

I totally commend the "good guys". But the bad guys are out there!

[Andrew10573]

Springazure,

I applaud your courage and loyalty.

My own mother had a similar situation to your mother.

She worked until she was 75, broke her hip and got dementia.

That is a very common scenario -- hip fracutre/dementia.

Like your mother, my mother was violent and angry and suspicious.

The beginning was very hard but after a few months my mother settled down to a simple routine that I worked out for her and was comfortable and happy.

I read the 36 hour day and other books that helped me greatly with issues like giving my mother a shower everyday -- a hurdle for a person with dementia.

Eventually my mother came to trust and depend on me as her caretaker.

Had my mother been placed in a nursing home besides the liklihood of abuse she would have been drugged up and neglected by an underpaid, overworked staff.

I hung in there and took care of her for 4 years until she finally died of pancreatic cancer -- I got home hospice.

I could never be so cold as to place my mother in her condition in a nursing home.

God bless you.

[springazure]

And to all you Caregivers.... yahoo groups offer numerous forum groups. Check them out. There are forum groups for Alzheimers, groups for Parkinson's, even groups for Lewy Body Dementia. This is one of those jobs you just can't understand until you've lived it...

The 36 hour day!!!!

[Escort Rider]

Originally Posted by springazure

Just don't be sooooo eager to spend all your money on high priced cruises and whatever. Every time I hear somebody say "i'm spending my kid's inheritance", it just makes me cringe.

I see your point, which I believe to be this: If you spend most of your assets and then become demented, that leaves your children in a real bind because they are without financial resources to care for you. (Correct me if that's not pretty close to what you meant).

However, this whole business of one's "kid's inheritance" is a philosophical matter. I'm not sure I agree with the implicit idea behind that use of the possessive, namely that the inheritance really belongs to one's kids, that it is something which is due to them. If your kids are not disabled in some way, if they are doing O.K. in life, then I do not think it should be de rigeur to leave them anything. Yes, from the other side of the coin, many kids also think an inheritance is something owed to them by their parents. I think that, too, is mistaken. If we have done a good job providing for our children as they were growing up and if we have equipped them well for life, then I don't think we owe them anything further. After all, didn't we raise them to be independent, autonomous adults?

As for the contingency you are talking about - unusually burdensome costs for medical and custodial care at the end of life - that too is a philosophical issue. To what extent should we try to plan for every contingency? After all, many, many people do die suddenly or within weeks or months of becoming incapacitated. Is it realistic for people of average means to plan for the worst possible scenario? The answer to that would depend on one's take on things and as such, might be different for each of us.

Suppose your mother, for financial reasons, had had to remain in nursing homes. You wouldn't have been comfortable with that idea for very good reasons which you have explained, but whether that outcome is unthinkable very much depends (as before) on one's own philosophical outlook. It may not always be possible to have exactly what we want.

[blondiel]

Originally Posted by GLS

With great sensitivity to the OP's personal experience, try multiplying this by 100 or 150 patients.(Federal law says we have to call them "residents". Would you want to live here?) I have had the priviledge over the years of working with the Nurses, CNAs, Occupational Therapists, etc. that care for the elderly doomed to spend their final years in a long-term care facility. With the exception of a few "bad apples", which we try diligently to weed out, the staff are heros in offering compassion and the highest quality of healthcare with minimal resources.

If you are one of the unfortunate family members with a relative in a Nursing home, continue to be a strong advocate for improved care. Visit as often as you can, understand the Care Plan, maintain contact with the physician, and always ask questions about the rationale for therapeutic decisions. However, before you are hypercritical of staff, put try to put yourself in their role, and the emotional stress they carry home to their own families on a daily basis.

Very well stated. Everyone can not quit their jobs and take care of their parents. Nursing home is the only option many people have. Every institution including hospitals and schools, have horror stories. Family can be proactive by following the advice of GLS posted above for nursing home care. Most people do the best that they can for their aging, sick parents.

Long term care insurance is not only for nursing home or facility care. Long term care insurance will also pay for in home care. LTC insurance plus a good retirement benefit will usually pay for at least day care and possibly some night care. If one feels that one has to give up the job and one's life to take care of a sick parent be happy with the choice made.