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

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 Answer

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.