I'm New Here

FreeHugz

I've been a part-time caregiver for my dad for almost two months. My brother and I split our time staying with him. My mom, who had been his full-time caregiver, passed away in June. They were married for 60 years.

My mom kept the extent of his condition somewhat hidden from us. Over the past couple of months, my brother and I have been learning as we go, spending time with him and observing where he is in the progression of his dementia. From what I've learned so far, he seems to be in the middle stage.

Today was a hard day. He wouldn't eat breakfast or lunch. He also gets very stressed when his dog won't eat, and that quickly leads to him becoming agitated. I constantly question whether I'm doing enough or if I'm capable of caring for him the way he needs. I want to fix things, and when I can't, I feel like I'm failing him.

This afternoon was a little better. I was able to convince him to go for a drive with me, and we took a walk along the waterfront—something he hadn't been willing to do for several days. It felt good to see him enjoy that, even if only for a little while.

I'm here for support and to learn more about Alzheimer's and dementia. One question I have is: How did you know it was time to move your parent into a memory care facility? What helped you make that decision?

JulietteBee

Hi there and welcome to the group no adult child has ever begrudged being a part of. I am sorry to hear of your dad's diagnosis and more so, your dear mother's death. Please accept my condolences.

I cannot tell you there is a "sign" or a "right time" that is universally used in figuring out when to move our parent/s.

I moved my mom from her marital home of almost 50 years when, by Divine intervention, she went blind in one eye and was no longer able to drive. Over the years of watching her cognitive decline, she had resisted moving. Going blind was capitalized upon to get her out of her house and into an into an ILF 1 mole away from me. She stayed there for 1.5 years while dealing remarked well with unspecified Denentia/Mild Cognitive Impairment.

After much advocating and pestering of her doctors, she was finally given a battery of tests which revealed she has Alzheimers and Vascular Dementia. That was in March of this year.

Once I saw the big "A" in her portal as a diagnosis, I knew I had to be proactive. I set my Plan B in motion. My husband and I bought a bigger house and moved mom in with us. Going forward, we will add Home Health Aides as are needed or hire a live-in aide. For now, my husband, my adult child, and I are her primary caretakers.

For you, the "time" may become a reality after a non-fatal kitchen fire/s. It may be due to frequently noted new dents in the car. Wandering, being incoherent, financial mismanagement, etc, may very well indicate that he "time" has come.

Keep in mind, your dad not wanting to eat or go out, may not be due to his diagnosis. It may be due to his grief. He may have lost the will to live and would prefer death rather than enduring life without his beloved at his side.

The Bible says, "Seek and ye shall find." It applies in this situation as well. As you and your brother continue caring for dad, you will be able to see the extent of his struggles and then be able to make your plans based on observation.

All the best, and again, so sorry for your loss.💔

H1235

Welcome. Splitting time with your brother to care for your dad 24/7 is a lot. Is this really something that can be sustained? It’s only going to get more difficult. Some facilities can have a waiting list to get in. If you’re not ready when a spot is available you usually just remain on the top of the list. Even if you’re not ready yet it’s a good idea to have a place picked out, have him on a list and ready to go. Your dad may not agree with the move. Many with dementia don’t understand their symptoms or limitations. You need to do what is best for all of you, he is probably not able to use logic and reasoning to understand why he would need a facility. Unfortunately no amount of evidence or explaining will convince him. At least that’s generally the case. Has all the legal stuff been addressed. You or your brother really need a DPOA. This is incredibly important. If you don’t have it make a with an appointment with an elder law attorney tomorrow! I will attach a few resources.

DBAT.pdf

understanding-the-dementia-experience.pdf

Anosognosia and Dementia - AgingCare.com.pdf

https://iona.org/therapeutic-fibs-ok/

https://www.helpinghandshomecare.co.uk/care-advice/what-is-show-timing-in-dementia-patients/

April23

Hello and welcome. Glad you’re here but sorry for the reason.

The short answer is that once a PWD’s health, safety and daily needs can no longer be managed then it’s time for long-term care. There can be many factors involved: wandering or exit seeking, mobility issues/risk of falling, incontinence/hygiene, complex care needs, etc. Caregivers also have jobs, marriages, households, their own health issues, and a myriad of other reasons that make caregiving at home impossible, especially as the disease progresses. That you are even trying is admirable. But it is very likely at some point his needs will be greater than your abilities, and that’s perfectly ok. Only you can say when that time will be. But it’s probably best to start preparing now.

notequipped

No answer but our situations are very similar - down to how long my parents were married. My Dad passed suddenly in late February though it wasn’t completely unexpected. While he was in the hospital, it became very obvious very quickly that it was not a good idea to let my Mom continue to drive or stay in her home independently. She has been with us since then.
While she seems happy enough here, I’m mentally, physically and emotionally exhausted. I frequently have break downs. I just can’t do this anymore and, frankly, I don’t want to. I work from home but it’s extremely difficult when one ear is always listening. Not to mention the lack of a home life or social life. I’m not up for having a parade of strangers in my home so it’s pretty much me, 24/7. My husband owns a business that he is very hands on with and has what is usually a pretty erratic and hectic schedule. I haven’t had a haircut in months. Let alone dr, dentist, mammogram, etc. An additional consideration for me is that my Mom is very social. On some level, I think that she will really enjoy the social interaction once she gets there. Getting her there is not going to be easy though.
When googling the question, safety and caregiver burnout seem to be the big drivers for placement.

We are going to start looking for a facility this week. We just had legal documents signed late last month and the follow up with the neurologist was yesterday. For my own peace of mind, I needed medical professionals to independently confirm where she is in the AD process and that independent living really isn’t an option at this point. I can move forward now with a clear conscience.

jen ht

Hi @FreeHugz

Welcome and I'm glad you found this space although sorry for the reason.

Some folks here have said that when the time comes to ask the question you've asked, then it was likely already "time" prior to your arrival at asking the question. I'm not wording that well, but hopefully you're tracking with me.

For me "time" was when I couldn't keep dad safe. He was being scammed (even more so than I realized). I was worried about his driving and having a phone/internet. He was living alone and several states away from me.

It was so difficult, but sometimes difficult decisions have to be made. I had PoA, so I took action to protect him.

I wish you well. This is a great place for support, information and insights. I also used the Alz Assn 24/7 helpline a few times.

Take care,

Jen