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SalmonGarflukel Asked January 2017

When is assisted living the right choice?

A little background: My mom (widowed, 68) was diagnosed 4 years ago with early-onset frontotemporal dementia. Through literature and other's experiences, I figure that she's possibly been in the early stages for about 10-12 years prior to her diagnosis. She seems to be slowly moving on from the mild stage and onto moderate. She lives alone, with her cat, in a 55+ apartment community and my husband (37) and I (33, and her POA) live about an hour from her and are her only close family members. Through an MLTC, she goes to an adult day center 4 times a week and has a home health aid who visits 6 nights a week from 4 pm to 9 pm. Both the center and the aid monitor her as she dispenses and takes her medications. She enjoys the day center because she loves activities, going on outings, socializing and making friends. She also adores her visiting aid. Together they cook, clean, do laundry, and socialize even more in the comfort of her home. Before this level of care, she spent a majority of her time watching TV or at church. She does have a seizure disorder that is currently under control of medications. She use to only have sporadic seizures in her sleep when I was growing up, but since the progression of this disease, she has had them more frequently (3-4 times a year) and in mid-conversation and while shopping at the grocery store. It also often happens whenever I travel (remember this)! Even though we set her up with bed rails and an emergency call response service, I worry about her being alone at night with no one around. Ok, now onto AL: My husband and I have visited a few assisted living places (all for ALPs beds since she has no income and we cannot afford more for her). Last winter, my husband and I toured the nicest ALPs facility in Yonkers that we could find. It felt kinda like a cruise ship, I'm not joking. We took a 2nd tour with my mother in May and she obviously wasn't sold, especially since she knows she will have a roommate, but she seemed to be upbeat about it. She liked that it was closer to us in CT, and that she would be able to garden in the empty raised beds out back, which is something she really enjoys doing in her free time. Weeks after we got back from the visit, I learned that she started taking down her paintings because she thought we were moving her in "that place". She does have a history for being a passive-aggressive master manipulator, as perhaps some moms do, so I just dropped the conversation because I didn't know what else to do. I didn't want to cause her more stress especially since she feels she's doing well at the day center and with her aid in her own apartment. And now for the dilemma: I was accepted into graduate school (travel!) in Europe (travel!) for a year (travel!) this fall and I don't think I can focus knowing she's on her own at nights if there's an emergency. My husband is staying in the US to hold the fort (a tiny apartment), keep on with his work and passions, and to continue our bi-weekly visits with my mom. FYI, she's maxed out on her MLTC hours and doesn't fit the requirements to get more time or an overnight nurse. If she needed help bathing, dressing, feeding, perhaps they would extend her time. I don't think they even consider her increased seizure activity a reason for an over-night nurse, but I guess I could ask. I was going to ask your opinions if her current state of care will be sufficient while I'm away, but in typing it out, I already know that it will not be... right? I keep talking myself in circles trying to figure all this out and I'm just failing miserably. I just want what's best for her socially, emotionally, psychologically and spiritually, and I'm worried I'm going to mess everything up for her; however, I also feel my happiness and my ability to focus in school are also really important. As I wrote, she's ALPs eligible and I would feel so much more relieved if she were to get her care in all one place (she'll obviously need to see a neurologist, but the facility can transport her to one). To my knowledge, we wouldn't need to periodically reapply for her SNAP benefits, Section 8, etc., since the facility would be all-encompasing, which gives us both joy! I think SSI would still need to be renewed? Obviously, all I can see are the benefits of her care in AL, but what of her well-being there? I'm worried that she could take a total nose-dive and get worse with this disease. Could that happen? I hope that she can socialize more but also retreat to her shared room when she needs a break. I've also heard from my husband's parents who've had parents of their own go through this, and the majority of them say I should assist with this transition as soon as possible while she still has her faculties and can acclimate and adjust quickly. Too late and she may constantly "want to go home" and be miserable and unsettled when she advances to the moderate to late stage. Is a common situation for families? Thank you!

Countrymouse Jan 2017
I think you already know the answer. But just to back you up:

The more time she has in AL *before* she absolutely needs it, the more able she will be to adjust to it and get comfortably settled. It's always better for a person to walk in than to be wheeled in.

She will be closer to your home, so while she's settling she'll see more of you (not so much that you distract her from making new friendships and relationships, mind).

Having more help on hand will free up her remaining energy and faculties for interesting activities and socialisation - she won't be having to tire herself coping with everyday chores.

It's a good facility, which means that they will encourage her and support her to do as much for herself as possible. They won't just plonk her on a chair in front of the TV and allow her brain to rot.

Your mother is "expecting" this to happen. Okay, her interpretation of that wasn't quite accurate; but it does mean that on some level she has accepted that it's the right move.

Do it now, and you'll have time in hand. Best of luck, and may she have a happy and successful transition.

BarbBrooklyn Jan 2017
I agree with Jeanne. This sounds like an ideal time to make the move, not only because it will allow your mom to adjust, but because you want her first few months in AL to happen while you're around, because there are ALWAYS kinks in the beginning. You want to get her settled with the facility doctor, if she will be switching her care to her/him. You want to learn the ins and outs of how/when/if the facility communicates effectively.

It sounds to me like you've got a good plan, but this time frame allows you to make a change before you leave if that happens.

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jeannegibbs Jan 2017
I think for your mom assisted living is the right choice now. Being closer to you and your husband is a big plus. She will have activities to participate in- kind of like adult day center every day. She will get wholesome meals, and have companions to eat with. Medical help will be available if needed.

It sounds like you have things covered very well for right now. Why is now a good time to change?
1) You are leaving the country. Having her in a safe environment is important!
2) You have noticed she is getting worse. It is most likely that she will eventually need more care than is feasible at home. As your friends point out, it will really helpful if she is in a facility before that, so she can become familiar and accepting of it.
3) What if she gets worse while you are overseas? This would be very stressful to handle long-distance.

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