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You recognize that it is still not going to be ideal, which is realistic. But what would be ideal? A cure for ALZ, I guess. What you have to aim for now, in the the words of psychotherapist Pauline Boss, is "good enough." I found Boss's book, "Loving Someone Who Has Dementia," to be very insightful about the caregiving experience. I recommend it.
Has a doctor suggested Mum has only a year or so left? I'm surprised. Usually they are reluctant to give a prognosis like that until much closer to the end. You might consider a hospice evaluation. It may be too soon to start the program, but it would be good to have the benefit of their experience, and to start looking into this before need.
About your statement "Mum would no way adjust to assisted living." Many of us have felt that way and when it couldn't be avoided, discovered to our amazement that yes, our loved one could adjust. My sisters and I often asked the nh staff, "OK, who is this impostor, and what have you done with our mother?" Mom went to nearly every activity offered. WHAT?! She visibly blossomed in the nursing home for her final two years.
Also, I kind of doubt assisted living would be the right level of care for your mum in such an advanced stage of dementia. A nursing home might be more suitable, but she would be assessed if you decide to go this route.
Here is what the Alzheimer's Association says about late stage ALZ:
"Since care needs are extensive during the late stage, they may exceed what you can provide at home, even with additional assistance. This may mean moving the person into a facility in order to get the care needed." Know that it is not defeat to have placement in a facility as a backup plan, and to execute that plan if/when it makes sense.
I'll post again, with some activity suggestions.
My Husband had been diagnosed with Alzheimer's and I think he also had Vascular dementia. He "survived" ,I hesitate to use the word lived, for 12 years after he was diagnosed. Urine incontinence, then bowel is not the beginning of the end by no means.
Does she wander? Will she be getting up at night? A gate across stairs can be just as dangerous as the stairs themselves. She may try to step over the gate and fall down the stairs, not see the gate and trip over it.
Are you prepared and mostly is your Husband prepared for 24/7 care?
Do you have a bathroom that will accommodate a walker, a wheelchair? Do you have a shower that will be easy for her to get in and out of?
Grab bars by the shower? by the toilet?
If you think she will not adapt to a facility she will have the same problems adapting to your house. It is still a "new" place.
This will change your life, your Husbands life, your marriage. If you have children it will change your relationship to them as well.
Final...you can not nor should you do this alone. You will need other caregivers. Give yourself the same break you gave your Dad (stepdad?) So 2 or 3 others to help you out would be great. Keep in mind you will be with her at night as well and the nights can be just as challenging as the daytime.
May God bless you and see you through. I will keep you in my prayers. You will have good days and bad days. Best wishes.
And if you are needing to look into placement,, try a MC instead of a NH.. it worked well for my dad's last month, and my MIL has been in one for about 2 years. I think tjey have more interaction and knowledge of ALZ
Lots of good info posted in reply to your question. One in particular from Alzh101 I think struck home with me. Based on what you said it would appear that you can not have a productive conversation where your mother can tell you what she wants in terms of future care. I am writing from the perspective of a Dementia/Alz ? patient. Fortunately for me based on advice I've learned on this website I've been able to think things through and have made a lot of decisions as to what I want as far as future care is concerned.
My DW and I have had a 50/50 split in terms of sharing domestic workload at home for the 20 plus years we've been married. One of our favorite past times has always been cooking together. Together, we even cooked for many years for a Service Organization we were members of hosting banquets for between 15-300 people. This was a source of great joy. I understood early on when my diagnosis was confirmed why I had trouble preparing our meals on my own for our family. No longer could I follow a recipe. Now, we'll lay things out for the next days' dinner and while waiting for her to return from work the next day, I'll wash and cut up veggies, take charge of thawing the meat, I still do all the laundry for us and our 11 yr old daughter, shop from a simple list of things to buy from the store, etc. I acknowledge when I don't understand particular directions, or what my DW wants me to do. DW has been a school teacher for 30yrs, so she will patiently work out a way of explaining things to me so I can understand. On the occasion I still can't understand, she accepts it and will complete the task herself, or ask one of our children for help. I go and wash dishes for a Senior Lunch once a month given at church. Again, this is a task I can still manage on my own and the people running the lunch, know of my diagnosis, and willingly support me.
Yes, all of these things are useful in keeping me engaged and I believe anything you can offer your mother to make her feel she is being productive will be helpful to both of you. Finding what those things are, may be difficult at first. Read through this site and you will find a lot of help appropriate to whatever stage of Dementia applies to your mother.
Now is the time for you and your DH to discuss among-st yourself at what point you will both want to move mom in to some sort of MC/NH setting. Agree between the two of you that you won't keep moving the goalpost. A great bit of advice I received from a Priest friend many years ago, each couple's primary responsibility is to their dependent children and their marriage. No, we don't want to abandon our parents, but we can't be afraid of accepting the responsibility to do what is best for them, ie. turning them over to a setting that offers 24/7 professional care.
I made it very clear to my DW and all four children ages 11-37. Please put me in a facility far from home when I am no longer actively engaged in daily life, or so incapacitated that I can't do the things I love to do and be productive. I don't want them to be in a position of trying to care for me and having it become an all consuming part of their lives. I believe their priority should be looking out for their own families, and for my DW to be able to live a life engaged with the world enjoying life. I write this knowing she'll do everything she can for me, but respects my wishes on how I want the next step to go when I need more care than can be reasonably expected. I also encourage you and your DH, to think about what you want in terms of your future care, and get all the legal moves made now, while your health is good and you are of sound mind. That will be the best gift you can give to your children. My thoughts. I hope they are helpful. Best of luck and prayers for you and all of your family.
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