Should I go against my siblings' wishes and put Mom and Dad in an assisted living facility?

7 answers | Last updated: Oct 11, 2016
A fellow caregiver asked...

Mom was diagnosed with dementia two years ago, and is now demonstrating symptoms of stage 6 Alzheimer's (thinks people are stealing from her etc...) She broke a hip and needs to use a walker (which she says she doesn't need) and isn't cooperating with them. Dad was also diagnosed with dementia a year and half ago. His is related to decades of alcohol abuse and his demeanor is apathetic (doesn't care about anything).

Three kids, all in different states from Mom and Dad, forced us to get home care to help them through their day. I've been concerned that Mom's condition is taxing the skill-sets of the home care givers and have already investigated an Alzheimer's facility for them both. It has been just a matter of when that move needs to occur. In just the past few days, we have found that Dad's multiple diagnoses of pneumonia is not pneumonia. A CT scan confirms it is something else (cancer).

My siblings insist that we keep Mom and Dad at home, but I am not convinced it is where they should be, especially now. Aside from the cost of home care (which is 24/7) the caregivers, although excellent so far, are not equipped to deal with what lies ahead with a confirmed cancer diagnosis. I am also gravely concerned that Mom has no idea how bad this is, and Dad just doesn't care about much anyway and can't communicate how he feels (pain, nausea etc...). Am I wrong in making a decision to get them into assisted living now? Should they be at home?


Expert Answers

Kay Paggi, GCM, LPC, CGC, MA, is in private practice as a geriatric care manager and is on the advisory board for the Emeritus Program at Richland College. She has worked with seniors for nearly 20 years as a licensed professional counselor, certified gerontological counselor, and certified geriatric care manager.

Your parents are so fortunate that they have a caregiver who is willing to go against their wishes to obtain the best care for them. Possibly the most frustrating symptoms of dementia is the patient's inability to make rational decisions and their fear of leaving a familiar environment. These symptoms force the caregiver into desperate choices: either leave them in the unsafe, less supportive environment, or go against their wishes and place them in a secure, more healthy setting.

In your parents' case, they will do better in assisted living or dementia care. Your father will apparently predecease your mother, leaving her in the home they shared, wondering why he is not there. Given her late stage dementia, she may not remember that he has died. It is far better that you do not tell tell her repeatedly because this will cause a new round of grief every time you tell her. Better that she is in a less familiar setting where she can look for him until a staff person re-directs her.

In the same way, it may not be best to tell your mother more than once about your father's terminal diagnosis. It will cause lots of anxiety, and there is nothing she can do to avoid the outcome. Being in a structured dementia unit, there will be staff and activities to distract her.

With your father's diagnosis, the time to act is now. Most facilities will take someone before they are actively dying, and then keep them during the final stages, usually with help from a hospice team. On the other hand, they may not accept someone who is actually dying because of the increased amount of staff time required by a resident who is seriously ill. This means you need to place him now.

I hope that you will be pleasantly surprised. Many dementia patients get better after the initial period of confusion when they move. There is more stimulation, more appropriate activities, other people who are like they are, more structure, which often mean an improvement in the mental and emotional well being. This will make you and your siblings happier, too. Good luck.


Community Answers

A fellow caregiver answered...

OMG, it is like you are in my head! Thanks so much for restoring my sanity, this has been gruling. I too am worried about having the facility take Dad too now. The good news is that the Alz wing is attached to the nursing wing. I will hope for the best. I think I'll be putting a date on the move in the next few days. THANKS for taking the time to respond.


A fellow caregiver answered...

I am going through a simular problem. Deep in my heart I feel My mom should be in a Nursing home. Not that we want them there But It would be the best place for them. They would get the care they need with supervision and visits from you and yours They could be well cared for.


3generations answered...

My mom died in June, and my dad has dementia. True to the above professional reply, about 4 months after mom's death, dad suddenly forgot she had died. He began calling people asking where she was, and walking around his assisted-living facility, out the doors, and down the street, looking for her. It is extremely hard for a grieving daughter to have to tell her father over and over again that mom has passed. After a full psychiatric and medical evaluation, doctors recommended that dad move to a smaller, more secure facility. While it was heartbreaking to move him to a place with a "wander management" program, at least we know he is safe, surrounded by staff who understand his disease and can comfort and redirect him as needed.


Frena answered...

there is a sort of perverse rule of family dynamics which says, "Those who live furthest away and do the least for aging parents have the most to say about their care."

it's clear you know what's needed and you're absolutely right to assume that dementia caregivers will find care of a second person dying of other disease conditions overwhelming. i'n a dementia caregiver, i know. dementia care takes up all of a day and requires a very different set of care skills. nursing care needs nursing skills.

do act as soon as you can to get them into the care they need because Kay is absolutely right -- good care places always have more needing them than places available and the later you leave this, the less they may want to take your parents. get them in place for what is to come.

at this late stage, it's not what anyone wants that matters -- it is acting appropriately for their health situation.

you're absolutely thinking right on this and i know it's not easy for you, especially with other family opinions. get consent and advice for this change from their doctors, to arm yourself. and make sure your financial dealings are totally out and open, since this can also arise with sibling disagreement. keep written accounts.

have courage and go forward with your plans -- you really are serving your parents needs the best!


The caregiver's voice answered...

Beyond the other comments so far which I agree with, I offer you two additional thoughts--

  1. If your mom is on medication such as Aricept, this may be holding her at this paranoid stage. Not a good thing. Talk with her doctor about removing her so she can decline a little and get through this terrible stage.

  2. Even though my husband and I felt like we were getting Alzheimer's trying to keep up with my father's care, we ended up placing him. Still, know that many of us would rather live our final days at home. If your parents have the assets to pay for in-home care, talk with the company you're using to get three hours of more skilled nursing care.

HOWEVER

Given that you and your two siblings are long-distance caregivers, another option is to place your parents in a board and care home--home away from home.


Krakat1 answered...

Interesting how things happen over time. Many of the uncertanties become clearer. Obviously I've been agonizing over this for a very long time. Mom's depression/anger was almost unbearable. Her Neurologist saw it first hand and prescribed Zoloft for her. I had mixed emotions and was leary about using anti depression meds, but it started working in a great way in early Dec. She is still confused, but her mood is better in such a way it allows her to cope with a lot of heady things that are happening to her. Dad's condition continued to decline at a rapid pace. The need for more intense medical attention became evident. Here we are a month later and Mom and Dad were moved to an assisted living facility just over a week ago. So far it's been going beautifully. (Not sure how it would have gone had Mom not had pharmecutical help). Bro wonders why we hadn't done it before. Family friend admitted that she was wrong to push only home care. She sees how well they are doing and is very happy that we were lucky to find a great place for both of them. (TONS of research went into finding this place). Socialization has been crucial to their transition and we see signs of thriving for the first time in a very long time. We had 24/7 home care for the past year and a half. The one gal has been with them from the beginning will stay on with them M-F in their new digs for a few hours each day just to keep an eye on things on their (my)behalf. It really is the best of all worlds so far. (short of me bringing them here to live). Dad started radiation and is getting so wiped out, he sleeps all day. I explained to Mom (as much as she is able to understand) that Dad has all the professional medical attention he needs and that she doesn't need to be held hostage with Dad's condition. There are people and activities for her. It's been great to see her relax and quit worrying so much. I'm keeping an eye on things as best I can from 400 miles away. I still have doubts about Zoloft and how long it will work with her. I am sure there will be things I don't like about their new living situation, however, at this point, it can't be worse than me being blind and helpless to their care at home. I am relieved. Jury may still be out, but so far so good.