when your mom's house is 2 hrs away and she needs full time help...

Beluga

I brought my parents to live with me 7 months ago when she broke her hip. She now uses a walker full time and her short term memory is shot (alzheimers). BUT she still remembers she has a home and asks for a ride back every day. She cries about it daily. I feel awful. I bring her back once a month to check on things and she does seem happy there. My question: Has anyone been in this situation in which you hired full time care for them far away knowing no family member could do any daily check in and did it work out or not? What were the issues? Tell me everything because i'm losing my mind and need to decide if I bring her home with full care (she has no friends there so it will be isolating other than caregiver and husband) or if I move them to an apartment near me. She can't stay with me b/c she clearly knows this isn't her home and my husband doesn't want them here. I have a 12 year old so can probably only go 1 or 2 nights a week to do a check in. I am their only child so have no one else to help me. I am also their POA. They aren't capable of doing much on their own so really would need a motivated, proactive caregiver (aka clone of myself). I want to know if this is just NOT a viable option so that I can focus on one that is (either a rental or a facility).

M1

I would opt for assisted living near you, if that's financially feasible. I would suggest that you stop taking your mom back to the old house, as that is likely exacerbating the problems. I know it's very hard to listen to the unhappy talk about wanting to go home, but you need to learn the fine art of compassionate fiblets. If your dad/her husband is willing, this would seem like by far the best option. The option of sending them back to their old home would probably necessitate hiring a professional care manager, which would also be very expensive.

Anonymousjpl123

Yes I agree with M1 - I do understand the desire ti give your mom what she wants. But there’s also the reality that their needs will increase over time. The good news is they still have each other for the move. The really great thing about assisted living is that couples can and do live there with relative independence. My mom’s place had many couples living together relatively independently - one couple even went on a cruise! But at the same time, there was safety and care when needed.

It will be so hard to make this move. But doing it now will be so much easier than later.

None of this is easy. But you are asking the right questions at the right time.

mommyandme (m&m)

Our situation was different in that my mom wasn’t married. She was alone in her home of 60 years, states away. She had neighbors we counted on for some oversight but very limited. My brother and I partnered in her care, he was in even another state. Long distance caregiving is very challenging. I don’t recommend it if possible. We started with part time help and switched to full time help after a year. It worked for awhile, we had a great relationship with one of the caregivers. She became a friend that we counted on often. My brother and I traveled every month alternately to check on things and go to neurology appts etc…. Then the destined 24/7 care need arose. We did our best to accommodate that. I must say that an AL or MC in her state wasn’t practical because she still had no family there. We’d still have to travel often to see her. Since we counted on her for some decisions still (oops) and moving her closer to one of us wasn’t acceptable to her, yet, there she sat. We got in 24/7 caregivers and cameras (invaluable). It was a nightmare to find the right people and schedule but we managed it for six mos. Completely fell apart as one of the caregivers went a bit bonkers, possible dementia? as I look back. So many really difficult situations came up within the almost two years of our long distance caregiving days. One of us had to fly out on an emergency basis a few times. Finally we moved mom to the house behind ours (my husbands and mine) and I became her 24/7 caregiver (my choice), still closely partnering with my bro. That was difficult too of course, nothing about this disease is easy, but at least I was there to manage her journey first hand. Also, I was near my family, grandkids etc…and we hired in help so I didn’t get too burned out. Plan B (MC) was an option throughout too.

Our situations are different, obviously. My opinion is dont consider taking her back home and instead keep them near to you. You will be a much better daughter, wife and mother if you aren’t spread so thin. If funds can afford caregivers two hours away, they can afford caregivers close to you. I’d find a place next door or close enough whether you decide to manage in home caregivers or an AL with an age in place model that offers MC when time. IMO and experience, long distance caregiving, even ‘just’ two hours away, isn’t good for anyone in the long run. Try to also minimize the amount of moves you all have to endure.

Your parents are fortunate to have you in their corner. I’m so very sorry you find yourself on this journey.

Beluga

https://alzconnected.org/discussion/comment/196744#Comment_196744

M1...So far the assisted living places I've looked into do not have the care that mom requires (constant supervision and reminders about how to use her walker and assistance to toilet, to everywhere as she now is constantly off balance with one leg shorter than the other). I like the idea of a community (although do they remember the people they see each day? Maybe doesn't matter). My concerns with AL are the lack of attention increasing falls) and her paranoia and suspicion about people stealing her things. They both really need someone to constantly suggest what to do next, motivate them, direct them otherwise they are lost (mom just gets fixated on her belongings if not distracted. I take it your LO had a positive experience with AL. Did he/she ever need to transition to Memory care and how important is it to find a facility that has MC?

If cost is same between a facility and in home care, would you still choose AL and why?

Beluga

https://alzconnected.org/discussion/comment/196762#Comment_196762

Anonymousjp...a cruise? That couple was definitely in better shape than my parents and I assume did not have dementia! I wish I could take them on a cruise (I can with some help I suppose but she'll still probably want to go home daily! Tell me why it is so hard to make that move to AL? Is it hard b/c from a psychological standpoint it's the 'last' stop, the beginning of the end, saying goodbye to independence, to all their prized possessions they've worked so hard for...I honestly can't imagine it, it's too emotionally gut-wrenching. Both my parents have homes with a lifetime of possessions they've collected from all their travels. (They are technically legally separated but dad feels responsible for her so is willing to give up his home).

Beluga

https://alzconnected.org/discussion/comment/196800#Comment_196800

m&m...In hindsight, do you feel having brought her to your home sooner would have been easier on you?

Did you get up to tend to her nightly? Imagine your brother was not in the picture (as I'm alone), could you have handled the back and forth on your own? I also have no support from my family so am truly on my own, other than people I hire. You have all three suggested NOT bringing her back to live but is bringing her back to visit also a bad idea? I feel like when she sees her furniture and her belongings, her memories return b/c they have context. At my place, nothing is hers so she never knows where she is. I'm so torn between doing what may be happiest for her (bringing her home) or for me (having them near but with the risk of another cognitive set back due to yet another move. She had TERRIBLE transfer trauma. I really fear that again. She became another person and stopped recognizing me for a few months (only at night though). That has now subsided after 4 months. This disease is a nightmare I could never have imagined.

M1

I guess I was using the term assisted living in a general sense; sometimes it works to place a couple in assisted living even though one partner is more advanced. Sadly they may need to be separated, with your dad in AL and perhaps your mother in a MC wing in the same facility. our MC does have a few couples' rooms where both are there, and that's another possibility.

My partner has been in memory care for coming up on two years next month; we never did assisted living as she was too far advanced. We could not find home help in our rural area, exacerbated by the pandemic--the few folks available were not vaccinated, and my partner needed that protection (she has a lymphoma).

Quilting brings calm

Thank you for the additional information in the comments. An AL is for people who need assistance but who can be alone in their apartment between meals, activities and overnight. The staff isn’t with them in those situations other than brief checks or when paged. An AL will provide medication management, shower assistance, meals, activities, transportation, laundry, housekeeping, etc. staff is on the premises 24/7 unlike independent living,

Given your additional comments, it sounds like your mom needs 24/7 supervision and direction. Meaning she can’t be left alone. That would mean an MC or 24:7 caregivers. 24/7 caregivers are hard to arrange and have 100% coverage. Most people aren’t able to sustain that without doing it themselves. Which you stated you can’t.

mommyandme (m&m)

https://alzconnected.org/discussion/comment/197534#Comment_197534

Mom finally agreed to move if we brought two of her cats and got a new doctor here that would hopefully fix her back pain. She was cognizant enough to understand. That timing worked out for us fairly seamlessly. We kind of just picked her three bedroom house up and moved it to our very similar three bedroom rental we had behind us. We brought so much of her surroundings to try to minimize confusion. She seemed to understand in the beginning. We did try to get her to move sooner without success. Funny though, as soon as she agreed we were running around like chickens trying to arrange it all. I even had to evict my daughter out of our rental to get it ready for mom.

If my brother wasn’t involved i’m not sure what would have happened. He was involved sooner than I, realizing she was in trouble, understanding her LTC insurance, taking over her finances etc… It took me awhile to commit to understanding mom’s situation. I was in denial that she actually had this disease. He probably wished I engaged sooner. My head was in the sand until it wasn’t. If he wasn’t involved I doubt I could’ve handled the travel very well. I think plan A would’ve been a facility, sooner than later.

I did tend to her needs at night. When we first moved she was still toileting herself. My 24/7 caregiving duties lasted 2.5 years here. I moved into one of the bedrooms there. My brother predicted I’d last two weeks. haha Lots of changes within that time. I started to get help in, some days, after about 4 mos, when I knew more of what I needed.

When taking her home for a visit becomes stressful, you’ll stop. If you’re both feeling good about it, I’d probably do it too. Is she agitated when you get back to your home? Does it make her more upset after leaving? Does she recall going home for a visit? You know your mom even in her demented state. But when you find a facility or apartment near you, you can bring some of her own things to help with the confusion, hopefully. Lots of times PWD are simply uncomfortable wherever they are, asking to go home even when they actually are…at home. I think completely moving her back home will be short lived and very hard on you. I do understand your turmoil though. There are so many moving parts and emotions.

I feel for you and yours during this difficult time and I’m very sorry.

Beluga

I realize, after all the insightful comments, that there is no easy or best decision. I wish I knew what would make her happiest. It's tough to make that decision for someone else. I have 2 more questions:

If someone needs as much supervision and guidance as she does (constant reminders with walker, needs help with all ADL's, short attention, bored easily, needs stimulation, social time, music, laughter, no hobbies), can assisted living provide this or do I have to hire private care on top of it? I feel memory care will give her more attention perhaps than AL but dad won't quite fit in just yet as he's not as impaired.

Have any of you felt that home care was a bit dull and not stimulating enough for any of your LO who had a more extrovert personality?

All of your insights help . There is no right answer and no one size fits all but it all helps.

Quilting brings calm

@Beluga

MC would be better for her. Some MCs will accept a couple and allow the lesser impaired person to know the codes to come and go from the locked portions of the facility.

Or she MIGHT be okay at an AL if your dad was there with her to basically be the aide you mention. He would get support from the staff to help him help her. I just reread all your comments, abs saw that they were legally separated. So I wonder if your dad would be willing to still be in that caregiver role?

Is there a possibility that your mom could go to an MC and dad go back to their home? Or his home? Could he live on his own or would you still be trying to be his caregiver?

mommyandme (m&m)

I did wonder at times if being at home with caregivers was dull for my mom. I did take her to an adult day care for a bit, she never loved it. We’d go for long wheelchair walks while she could still stand and pivot well enough. They were probably more for me than her. I’d try to get her out of the house as much as she would tolerate until she wouldn’t. Still I wondered if a facility would be more engaging. It was always there as a plan B. Because she was calm and seemingly comfortable and happy, home she stayed. Looking back through it all, it was right for us.