End stage

luxlady

My father insists on taking care of my mom till the very end. He is struggling medically as well and they need lots of support. They are currently in assisted-living however I’m wondering at one point do I insist on memory care?

trottingalong

I don’t have an answer to your question, but I will tell the story of my in laws. My MIL had Alz and my FIL was adamant she stay at home. He was 91 and she was 88 when she passed. She was bed ridden at that point. The siblings got together to discuss if they should just move mom into a facility. After much discussion it was decided that dad had the right to make the decision and we all needed to honor him. I checked in on them daily and their daughter on weekends. We did get him to allow assistance to come into his house 3 days a week so he could run errands. It’s difficult and every case is different. I hope you get some good advice from others who have been or are where you are at.

terei

I assume hospice is involved, but if they are not, she should be assessed. That would give them some help anyway

eaglemom

Luxlady welcome to the message board. You ask an interesting question, one with numerous answers. I would first ask if the assisted-living facility has commented that they need help? Has the facility raised their level of care because of this? Seek their opinion since they see them constantly - you know what I mean by that. Does that facility offer memory care? If it does and that's the direction you choose to go great. If not, then your moving her and he will want to be with her at the memory care facility. That is very common, but something you need to be prepared for. Another way might be an aid to come into the facility several times a week to help them out. And as was mentioned, hospice is a wonderful service which offers many options.

Its so difficult to see loved ones struggle. We want to make it better for them. But we have to listen to their wishes also. Think everything through and follow your heart as to what's best for both of them.

eagle

SDianeL

I would agree to speak to the AL facility. Can they increase care levels and allow them to age in place? If not they may have to be separated if your Mom moves to memory care. Memory care is also more expensive. It might be better if you can afford it to hire someone to help. Soon she will need 24/7 care if she is incontinent and bedridden. An elderly parent can rarely care for their spouse in late stage dementia without help. Hospice provides extra help and they also offer counseling for the family.

harshedbuzz

@luxlady

Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

There are many ways to increase the level of support your parents are receiving. Some might suit one party more than then other and some may require a no-nonsense CTJ with your dad.

What is the nature of dad's "medical struggling"? Does he have mobility issues, a chronic condition like cancer, COPD or CHF sapping his energy, or is it more frailty? Is his cognition sound? Sometimes when one has 2 elderly parents, both have some degree of cognitive loss but the one who is less progressed can fly under-the-radar. IME, poor judgment and executive function can be early stages signs of a cognitive shift.

Are you successor POA for your mom? One-third of caregivers pass before their PWD. You'll need a robust Plan B executable one day one if dad suddenly can't continue because of a medical event or death. To that end, where would you elect to place mom. That would be one option now.

What does "support" look like to you? Does dad need any caregiving himself with his ADLs? Is he able to manage his own hygiene but need someone else to take over mom's showers, toileting/incontinence care, dressing, hand-feeding?

Is dad able to take proper care of mom or is he failing to because of his own health issues or her unwillingness to allow him to help? This was the argument I made to get dad placed over mom's resistance. He was not a cooperative and pleasant PWD. Mom, for her part, was insisting on keeping him home because of societal pressure and financial considerations. But he would not submit to care and would not eat, take his meds, drink anything but Chardonnay, shower, change clothes, or move off the couch. He looked like a Yeti. Once placed, he allowed the staff to assist him and he looked and felt better.

Sometimes it's enough to bring in extra care for a few hours in the am and at bedtime. The AL may be able to provide this with an increase in their monthly fee. If the AL is more of a hospitality-model resort-like facility, you may need to hire privately.

It might be more cost effective for mom to go into the MC wing of the AL if they have one. They'd be on the same campus and could spend most of the day together but mom would receive enhanced care by professionals and dad would be able to rest as needed. A gentleman in my IRL support group did this with his wife— it was the best of both worlds. They could dine together in the main dining room, swim in the pool, she could return to their apartment to putter around and he could get back to his activities as well.

Dad's MCF has had a few instances where a married couple with one partner having dementia moved in. They shared one of the few double rooms.

Good luck.
HB

howhale

A tough decision to be made and you may question yourself regardless of which way you choose to go. I just lost my dear wife of 60 years. I was her primary caregiver. I tossed back and forth whether to move her to a facility or provide care at home many times. I knew what she wanted and that was to be in her home, but over time we must make those impossible decisions. Understanding your father's health concerns, makes it an even more difficult decision. What I will say, having kept my wife at home and at the end in her own bed, I am not sure I could go on had I not done that. The grief of the loss is overwhelming, it is a pain that overshadows any physical pain ever felt. I find some small peace in that I was with her every day, every hour, every minute until the end and fulfilled her wishes and my promise. Without that, I think I would see myself as having failed her and could not try to make it through this grief. I did bring in help and was lucky to find extraordinary caregivers to give me some few hours a day relief. If your father feel she has a commitment to keep her with him, be sure you understand how deeply he feels about that. This disease will challenge us at every turn but never lose sight of that happens after and if your father will be able to live with himself. I would not have been able to do so. I can barely do so now, even with the peace of mind that she stayed in her home.

Maru

If they are in an assisted living, they should be able to ask for help with many of their needs. If this is not the case then you will have to seriously consider a MC facility. Speaking as the elderly spouse of someone who has AL, I think it is vital to consider how moving your mother would affect your father. Basically, I say ditto to what Howhale said. After being together for 66 years, I don't think the either my DH or myself will fare well with either the separation or the unthinkable event of not being together at the point of death.I wish you well in your decision making.

Quilting brings calm

My mom and step-dad were in AL together. Mom had the cognitive issues and a walker, Dad had physical illnesses. When he was put on hospice, he was able to stay at the AL with the additional hospice help. Plus the staff stepped up. When mom went on hospice several months later, it was the same. She was able to stay at the AL until death, with hospice providing extra help. Again, the staff stepped up. Mom had just been moved up one level of care( extra $200 a month) before we called for hospice.

Talk to the AL nurse. She will advise you on what steps the AL will recommend. There may not be choices other than call in hospice, arrange for extra caregivers or move to MC. Your dad won’t actually be allowed to care for her beyond his capacity because the state regulations will need to be followed.