Avoiding putting Mom in a nursing home - Alzheimer's Disease & Dementia Message Board

Lookingout4Mom · 04-06-2008, 12:38 AM

My mom has told me in her most lucid moments that she wants to be with family, and not be in a NH or AL...

She is very early AD now...
For now, She is living alone, enjoying her retirement and the friends she has and eating out, etc....

Later...
I have room for her in my home...

We also have funds to move to a bigger house with land if need be. But, I do not think we need to do that.

Any advice is appreciated, as I am planning for her future tentatively...

It is so hard to plan all this out, has anyone gone through this with their loved one and not used a NH at all???
I do not know much about NH, only that myMom wants to avoid living in one.
We are really wanting to fulfill her wishes and not get her involved with the NH...

Gabriel · 04-06-2008, 10:15 AM

Looking, nobody wishes to go to a NH. My Mom looked me in the eye and told me she would rather be dead than to live in AL or a NH. My Dad swore he would never live in AL or a NH. That was a year before we moved them into AL. We tried despirately to keep Mom and Dad at home but it was impossible. Wishes and reality and not necessarily the same. The need to honor their wishes and the obvious reality that they needed more assistance than they could get at home tore a riff between me and my sisters. But when the time came for the move there were no other choices.

When I look back to my Grandmother who had ALZ I saw the same thing happened with her. She feared NHs yet there came a point them Mom and her sister had to place her in a NH. Again it caused a riff between them caused by Nannie's wishes versus the reality of the situation. But Nannie did end up in a NH because she could not get the care she needed at home.

Mom begged us not to put her in a NH knowing that her Mom had done the same to her. Mom knew she made the right decision for Nannie. I think what they are telling us is that they don't WANT to go to a NH but I think they are also charging us with the responsibility of knowing when to honor wishes and when to do what we truly need to do. Wishes and reality are not the same. Mom's wish to not overwhelm her family outweighs her wish not to be in AL or a NH. So if she was in her right mind I know she would do just what we have done because that is exactly what she did.

Honoring wishes is good until it becomes overwhelming to those burdened with the responsibility of caring for the loved one. I think it was Martha that said a loved one is placed when the care giver is ready. At that point the loved one is no longer able to make responsible decisions for themselves.

I am sure there are those that have cared for a loved one at home from start to finish. It depends on the loved one and their needs and the care giver's ability to supply those needs. If the time comes when those needs cannot be met then it is the responsibility of the caregiver to make the right decisions.

This is just my experience and I know that Mom and Dad are better off where they are. It is their care and needs at this point that over ride the wishes.

Love, deb

Beginning · 04-06-2008, 03:34 PM

DGabriel10 has so much wisdom! Many people still think of NHs as being terrible places, when in fact this is no longer true. A good NH will have 24-hour caregivers and routines that can make an AD patient feel safe. It will have a nutritionist who can help your Mom eat when she forgets how to chew or swallow. It will have other patients and activities so that she is not isolated in a home with tired, frustrated, overwhelmed caregivers. If your Mother turns out to be one of the 60% of AD patients that will wander, a NH can keep her safe. The AD can eventually progress to the point where a patient can't remember how to walk. Skilled nursing will ultimately be necessary.

Your Mother needs to hear that you will take care of her. She can't understand what's ahead. Someday taking the best care of her may mean that you will find her a good NH and will visit and monitor her care constantly.

My kids and I have discussed the fact that a NH is inevitable with this disease. Right now we're using day-care and a lady in our house while I work, and our youngest also takes care of her father when she gets home from school. We're in Yr 6 since diagnosis, and DH is now severely disabled at 63 (he'll turn 64 this year). The doctors have said that he's in good physical health, so it's likely that his AD will be terminal - but that pneumonia is often the final cause of death for AD patients. DH is a very cooperative AD patient and we have not had any of the experiences of violence, wandering, or other behaviors that might trigger a need for a NH earlier. We are hoping to have 2 more years of home care, but we're starting to collect information about the NHs in our area. We've talked about whether incontinence or not knowing us anymore will be the trigger...but who really knows...you can only do as much as you can as long as you can, before needing help.

Martha H · 04-06-2008, 04:21 PM

I agree. I was one of those who kicked and screamed and refused to even think about nursing homes. I had also promised Mom she would never have to go to ''one of those places", as she called them. I can only imagine what kind of 'places' she had in mind.

However, as it turned out, she went to live with my brother, she fell, etc etc - was disabled - and did have to go to one of those NICE places. We were so lucky, fortunate, or blessed - it began as a rehab place where Mom assumed she would go back home (first to Bill's house, and later 'home' to Mom and Dad as a child, not knowing she was 99) ...

Along the way she transformed the rehab into a 'spa', a 'recovery home', a 'hotel with a Swiss chef", and ''a place she had bought with her lottery winnings" --- all fantasies, of course. She was never unhappy there. At first she enjoyed being among people she soon considered old friends. There were many activites - we could never have provided her with so much variety at any of our homes! - and even an occasional bus outing.

The aides and nurses were loving. That, I think, is the most important qualification - do the staff treat her as if she were their own Mom or Granny? Do they laugh with her and tell her she looks pretty? A joke, a hug, a friendly word? Of course it is also important that no one smells bad. With many incontinent patients, including Mom, this was still maintained at all times - I never smelt anything awful. This was not a cheap place, and after Mom's money ran out, Medicaid took over her care, which was just as good as before.

I promised not to send her 'to one of those awful places' and I never did - we sent her to a happy, positive, loving place, and did the best possible thing for her final 2.5 years of life.

Love,

Martha

Lookingout4Mom · 04-07-2008, 12:13 AM

Well ladies, I am so grateful to be getting this advice, now, when I am on the verge of considering all of my moms wishes, and her future plans for her comfort and happiness.

I ARE VERY CONCERNED FOR HER FALLING AND BREAKING A HIP...SHE HAS 4 FLIGHTS OF STAIRS WHERE SHE LIVES ALONE NOW...

Seems like a slew of elderly break hips, I want to totally avoid that!

I am still not sure when she will need NH.
But I will keep in the back of my mind that the NH is not horrible, and I really am right now just making sure mom is busy and she is happy and comfortable, as well as keeping her level of independence to the max, which is very important

Thanks for the advice, I am going to transition mom from her home to either AL or our home....after a chat with her about this, and we will tour AL facilities as well.

Mom will welcome this chat, correct?

I hate to bring this up now, she is having a ball, and I want her to be embracing her new retired freedom with all these new friends she has made...

I feel like I am walking on eggshells, and I just need to slow down and take this disease 1 day at a time...

It is time to enjoy Mom, but, I want to plan as much as possible for her future...