Difficulty finding ltc for mom with openings in my area.

Sissy1 · September 12

Hello. New to the discussion board. I have been reading lots of post and so happy to have found a tribe. My mom lives with me and my husband. She was diagnosed with alz and lbd a year ago. It's heartbreaking, frustrating, difficult, and exhausting. I'm pretty much on my own caring for her as my brother passed away several years ago and my husband works a lot. I have his and both of my children's support and they all 3 allow me to vent when I need, which is way more often than I care for. Caring for my mom has progressed to the level of difficulty that it is all consuming and is greatly affecting my mental, emotional, and physical health to the point that I have nothing left for myself, my husband, our business, or my home. And now she is afraid when I have to leave the house without her so she does her best to manipulate me with guilt. I am well past the point of, "this has got to change" and have my mom on every safe & decent ltc facility list within an hours drive, but am still waiting. She only has medi-care and partnership (California's medicaid) so we are a bit limited. I don't want to put her somewhere so far away that I can only see her once a month or less, and I also don't want her in a facility that has terrible medicare ratings. It's frustrating and I only hope that my own physical and mental health will hold up.

Anyone else experience this issue?

caregiving daughter · September 12

I don't know what your financial situation is but perhaps being more flexible on location and then paying for a motel a couple nights a month or even renting a studio nearby the facility. Rather than visiting once a month, it could be visiting for two straight days a month.

Sissy1 · September 12

https://alzconnected.org/discussion/comment/282132#Comment_282132

This is something that I can consider, thank you.

It's almost a scary thought to have her so far away tho, almost feels like sending off a child. I just need to come to terms with it all. I do know that if I have her in a clean, safe facility with good medi-care ratings and caring staff it will help ease my mind. But still hoping for a facility closer.

ARIL · September 12

Welcome, Sissy1, but I am sorry for the troubles that bring you here.

You may want to consider a first placement farther away, with the idea of moving her closer at the first opportunity. Although my situation was different from yours, I did long drives every month for quite a while, and it was exhausting—but having my dad in a care facility, even a long way off, was still better than the previous at-home situation. As soon as I could, I moved him near me. That was more than two years ago. I visit quite a bit.

I now sleep decently most nights, and although this disease is still taking a toll on us all, my life now is much more manageable than it once was.

Most care facilities rent rooms by the month and require a 30-day notice. It’s not as though you’re signing an annual lease.

And yes, it is true that people with dementia can have trouble with change…but as a wise person on this forum recently said, we are making the best decision we can among bad options. My parent was confused with some of the moving (he was in four locations within nine months—a long story), but he settled in OK each time, and the decline in his condition has been owing to the disease, not the moving. He is noticeably better off now that he sees me often.

Your health and your needs should also figure into these decisions. That is not selfishness; that’s sensible. Really. Nobody gains anything if you get sick yourself.

One more thing: it may be worth calling the sales managers at your preferred facilities to tell them you’re thinking you need to place your mom soon, and asking if they can tell you anything about the status of the waiting list. And if you do a long-distance placement first, be sure to keep your mom on the local waiting lists at the places where you’d want her to be.

Wishing you all the best. We are here for you.

H1235 · September 12

My mom is an hour away. We are in a rural area (I’m almost an half hour from just about anything) and it was way better than anything closer. I drive there once a week. It’s a lot! I sometimes try to time it so I can visit and then get my groceries or run other errands while I’m out. But that makes for a very long day. I worry about getting to the hospital in a reasonable amount of time if she were to have a fall or something. Thankfully I haven’t had to deal with that yet. Have you considered a small private care home (I’m not sure exactly what they are really called). I was Leary of the lack of checks and balances in such a small setting, but there are some here that have been very happy with this alternative. The waiting list was something that really caught me off guard. I try to stress to anyone here that is even considering a facility to get on a waiting list! I hope there is an opening soon.

Sissy1 · September 13

https://alzconnected.org/discussion/comment/282135#Comment_282135

Aril; Thank you. That is good advice. I can definitely look into further away places with the intention of moving her closer when an opportunity comes. I appreciate you sharing your experience. ❤️

Sissy1 · September 13

H1235; I agree that getting on waiting lists is important. I have my mom on several.

As far as small private assisted living facilities, they unfortunately don't take her insurance and we just can't make up the difference.

Thank you for sharing your experience with me❤️

Victoriaredux · September 14

Have you talked to an elder law attorney about the insurance issue? An hour consultation may offer some solutions.

pamu · September 16

Keep following up on the admission applications. After mom's placement we received a call from one of the places we had her waitlisted on with an opening. I had emailed them for an updated status a couple weeks before so I think it helped. We decided to keep her where she is at because the other place didn't have a lock down unit (she's a wanderer). I'm not sure how long we would have waited if she wasn't admitted directly from the hospital. Unfortunately, sometimes it takes a crisis to make it happen. Also, check with her state's department of aging. They may have information and resources to help. I agree with the other posts that it would be worth it to get her in somewhere even if it's not close by. You are in crisis mode and need to make this more manageable. This could be a very long road. Before my mom's placement I felt like I was on the path to a nervous breakdown. I felt so out of control and my life wasn't mine anymore, it was hers with no end in sight. Mom has paranoid personality disorder, schizophrenia and Alzheimer's. I work FT, have two active kids and a husband. I was also having health issues. I can't say that everything magically changed when she was placed but we can now sleep at night. The LTC facility she is at is not perfect but we have a good communication with the staff and I think they truly care about mom. These decisions are so difficult.

Difficulty finding ltc for mom with openings in my area.

Comments

Commonly Used Abbreviations

Community Guidelines

Categories