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Shulamit Asked February 2018

Dad has dementia, is lonely. Lives at home with caregiver. Can we find an assisted living that gives him friends?

He lives far from us, his kids. Additionally, my dad wanders. forgets who he is. But can visit museums, socialize, tell jokes-- with family. Should I, his daughter, redesign my downstairs and hire a care-giver so he can live with me?

GardenArtist Feb 2018
Jeanne, thanks for sharing your observations. I know from reading your posts that you're one of the people who's "gone the distance" to care for your husband at home, finding ways to cope with changing environments (and still baking beautiful cakes all the while???) I've taken inspiration from your experiences.

BTW, everytime I see one of your cakes in your avatar, I'm tempted to get out baking ingredients! Usually I can successfully resist though!

jeannegibbs Feb 2018
I like GardenArtist's concept of bringing the AL to him. I said about my husband that as long as the level of care needed is Assisted Living, I'll do the assisting (with help). My sister said the same thing about Mom. As it happened, my husband did not progress to the Nursing Home level. Mom did.

If only we had crystal balls!

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GardenArtist Feb 2018
Shula, you'll find there are different approaches to the issues of AL vs. living at home, either alone or with family. So much depends on individual situations, especially the nature of the family relationship and the care the elder needs. now and in the future.

My father is one who will never go to AL. I recognize that it's futile to address that issue any more, so I've refocused on bringing the care to him. Before redesigning your home, a lot of thought should probably be given to what will be involved, especially with dementia but also with the apparent still decent quality of life with family.

For us in SE Michigan, $5K a month for AL would be the basic starting point. Then there's the additional cost of private duty to provide the services not included in AL monthly costs. Others here, especially FreqFlyer, have good insight to offer on this combined option.

We're taking the stay at home and accommodate option. After several months of searching, interviewing, attempting to get background checks on private duty firms (and finding that many are disreputable, dishonest, greedy and what I surmise are unreliable), I've found one that really is impressive.

It offers some unique qualities that are important to me, such as honesty, flexibility, cooperation, willing to negotiate contract terms, and military influence.

I've hired a cleaning firm and will hiring more for various cleaning and maintenance aspects of house upkeep. Tradespeople will be coming this or next week for estimates on other improvements, for the benefit of both of us and for the caregivers. I'll be creating storage areas in bedrooms in the event that someone eventually needs to stay 24/7.

(I live alone about 30 miles away, and my house isn't large enough to accommodate both of us - especially since my book and magazine collection barely allow me space!).

And I need downtime - that's an important consideration for you. Everyone needs his or her own respite time and space.

This will allow my father to remain in the neighborhood, which is a good one, close to a lake to which he frequently walks in good weather. Although some of the really good neighbors have moved to other areas, there are still two families that provide companionship (especially in summer), and support.

If I evaluate what we gain vs. what we lose, I think we'll be winners. But this also is a function of our own individual preferences, something that you'll really need to evaluate for yourself and your father, as well as the possibility that his dementia may/likely become more compromising.

If you want more details on our plans, just post again. I'm still fleshing out everything that needs to be done to change my father's home into his own private AL facility.

As to loneliness, that's one of the factors in favor of remaining at home. During the summer he's visited by neighbors. MOL delivers daily, and that provides a nominal but important socialization. PD will also be providing companionship.

He's also a person who prefers to choose friends with similar interests, which he has with his neighbors. Bingo and other common activities would bore him. I suspect your father might be the same way, especially if he enjoys museums.

I think if you read posts by people who have moved their parents to AL, you'll get a good idea of an opposite approach. I would spend some time here, reading posts from others who've had to make similarly difficult decisions for their family, list the pros and cons, and give some serious thought to the issue.

Try to develop accommodation ideas for all potential events, and cost them out. You might also research the idea of redesigning your downstairs. If you mean "basement", check with local code enforcement for specific "escape" accommodations. You'll have to have egress options in the event of an emergency.

If "downstairs" means "first floor", that's a different story. But I would also spend considerable time determining what would be needed for any redesign, contact companies that do assistive device retrofitting (installation of grab bars, widening of doorways (if possible), safety considerations for doors, etc.) to rough up a cost estimate. The Alzheimers Assn. has the best reference lists I've found, better than the AAA.

You, like many of us here, face a challenging decisions. Being able to move past the "AL option" has made it easier and more exciting for both of us to move forward with our plans.

And although I'm a tender young 74, I see the need to begin making changes for myself so if I live long enough, they'll be in place already.

Please feel free to ask as many questions as you like, and also please do take time to consider all the changes that would be necessary.

jeannegibbs Feb 2018
How old is your father, Shulamit?

Living together can be extremely hard on the relationship. Some people find it gratifying. My sister enjoyed having our mother live with her for a year before Mom had to be placed in a NH. (My sister is one of most laid-back,take-everything-in-stride person I know. How are you with tolerance and patience?)

Dementia gets worse. That's what it does. It is highly likely that it may be necessary to place Dad in a care center at some point. How much restructuring of your house makes sense if this turns out to be a short term arrangement?

Your dad would need a secure facility, because of the wandering. I'm not sure how many "field trips" they offer. But family could still take him to museums, out to lunch, etc. Many of the dementia residents are not up to socializing, but he would likely make a friend or two.

Eyerishlass Feb 2018
If your dad goes into an assisted living there's no guarantee that he'll make friends although he'll have the opportunity to. Often, it's difficult for people with dementia to make new friends but it depends upon how far advanced the dementia is. Since your dad wanders and forgets who he is I think it's unlikely that he'll make friendship connections but he'll be around people and that's not a bad thing.

As for him living with you, if he wanders he'll need 24/7 care. And if he's already lonely living in your basement will further isolate him. If assisted living is on the table that might be the better option for your dad and for you.

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