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...:angel:

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

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.

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

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...


:angel:

One thing you need to remember is that you cannot map out the future. It will be what it is. Keep an open mind and be observant. Your ability to realistically assess the situation is important because the situation will change from moment to moment. You are right to let her enjoy the level of independence she is able to maintain. You have done well so far and will in the future. You seem to be very level headed and have the ability to see reality. Be prepared for what might come but don't worry and fret to the point that you don't enjoy your Mom now. Grab every precious moment you can.

Also remember that your Mom's mind is clouded. She may not agree with reality as you see it and therefore may not agree with your desicions. She doesn't see her inabilities. In her mind, her world has gone crazy around her and nothing is wrong with her. Also she may not remember the conversation you have or remember it correctly. Whether she is agreeable or disagreeable at the moment it is likely to change with the next conversation. Be positive when you talk with her and expect the unexpected. When it is time to make a decision you are the one that will have to make it happen.

Love, deb

I know you have lots of questions and there isn't anyone that can answer them all. But I believe you have found a place to get a lot of your answers and a lot of openions. From my experience I believe I can help you set things up now that will prevent problems in the future. Have her give you POA both durable and medical. Have her put everything in your name. Her house, car, checking account etc.. Then have her go to Social Security and do what ever it takes to give you the right to her check and to make changes with her check and Medicare.
My Mom didn't do some of these things and I didn't know to do them either. But I know now that it is hard to do anything for someone else unless you have POA. SS does not honor a POA and will ONLY do what your Mom request.
As a caregiver of an Alzheimers patient be prepaired to give up your life as you know it now!!!! In the later stages most of your Mom's friends will not come around to visit and unless you have a lot of family that will help, it is a 24/7 job. If you thought raising kids was tough you haven't seen anything yet. Be prepaired for anything. One thing I know for sure is that it is very stressful and it takes a toll on you and your family. You will need help and breaks from her as she advances. My Mom is in late stage 6 and sleeps a lot now....we are just now getting some rest. She has stayed up for 3 days and nights without going to bed. A normal healthy person can't do this. But an Alzheimers patient can. This is where your going to need that help I was talking about. Along with the BREAKS!!!!
I said all of this to say that at some point you probably will look for a NH for your Mom. But I bet you will have to get to a breaking point before you do. You will not have any regrets when you do. That is so important!
Do all you can for your Mom but don't sacrafice your family and their health. We are at a point where it is hurting our health because of the stress and lack if rest. But now that Mom sleeps more maybe we can get recharged for the long haul.

Good Luck,
Laner

The best thing for you to do is also to read a few books on Alzheimer's ...the The 365 Hour Day comes to mind but there are more very good ones out. You will then be able to complete your task/planning when the time comes. My parents did not give us the extra burden of telling us that they did not want to be in a nursing home it really was a very 'nice gift' that they unwittingly gave us. But still when the time comes no one wants to...it doesn't seem like that is what we should do but....Alzheimer's has a progression. it is the same for all that get it. Keep your mom with you for as long as you need to but when she reaches the point of you being up with her night and day then the kindest thing you can do for her is to place her in a facility that can care for her 24/hr a day. So as you plan for her future also start your search of facilities in your area that take Alz patients. You have the time now before you are too stressed and clear headed to actually visit them and to find out what they have to offer etc...lots of paperwork and guidelines you need to learn about with that. Meanwhile, as you plan for mom to stay with you...you will need to be sure your doors or yard is secure. She will go through a phase that she will want to 'go somewhere' and they seem to just want to keep going/wander. I am sorry you have to deal with this it is not fun but keep in mind that no one expects you to keep her at home no matter what because it will get too hard. She never needs to know and eventually she will never know. I wish you well.

I kept Mom at home. Like your Mom, mine told me years before dementia was in the picture - to never put her in a nursing home. Which made the few weeks in a subacute (medical trial before return to hospital) two years back including Mother's Day that year, the most heartbreaking for me. I don't know if Mom knew where she was or that she wouldn't stay there but I remember her saying softly, "take me home."

I did have to place my Dad in one though. NHs do have nutritionists, etc., but unless you're there regularly - daily - often, it's a losing battle in my opinion. I noticed one poster mention nutritionists who help patients eat. If they're able to go to a dining room and feed themselves, that's something. My Dad was bedbound and while he was able to eat minimally despite his feeding tube, I'd find a tray next to his bed untouched. He either wasn't aware of it - but mostly needed help. What good if they deliver a tray and leave? That and hygene (changing, etc., if incontinent) are serious issues.

My Mom got bedsores with me standing there daily asking if she shouldn't be turned. I was exhausted at home - despite having aides, hospice and help. But I'd do it again - in a hearbeat. Do everything you can to keep your Mom home !