From home care to facility care to gero-psych

RobertsBrown

Hi friends. It's been awhile.

I was Diana's full-time caregiver for the last 3 years. I think I did pretty well, until we got to a phase where she didn't know who I was, which I was expecting and I was ready for, but she also did not like the strange man in her house, and refused any care from me, which I did not expect and I was not ready for. So here I had a person who is 100% dependent, but who will not accept cleaning, dressing, toileting care, or even meals. This was very bad, and I ended up seeking professional help in the form of placement in memory care. A lot of research preceded the move, and I thought I had a pretty good place. In my region, the expected cost is $9k - $12k per month, and I thought platinum cost equaled platinum care. This was not the case in facility #1, and I was not happy. I moved her after 3 weeks to a smaller, costlier, and frankly amazing facility. I hated the cost, but loved the care. Then Diana put her hand into a wall, and then took a shot at a caregiver. In my region, that mandates a 911 call, and the end result was my gal in the ER for evaluation. Once she was 'in the system', things progressed and she is now in a gero-psych unit in a major hospital. This has been very hard, and two things are happening simultaneously. She is received daily psychiatric evaluations and medications, and her care includes social workers and 'occupational therapists' to help her do stuff like feed herself. At the same time, I am now living alone, but have decided that when we have a discharge order she will be coming back here with me. I don't know the timeline...nobody does for sure, so I am just preparing and waiting and worrying. I will certainly hire in-home help, and I have started interviewing, but with no start date it is tough.

She has been out of my house for 2 months, and in the gero-psych ward for 5 weeks of that.

As you can imagine, I spend most of every day worrying if I can take the load on again, what I should do differently, if I should just commit to permanent facility placement, if one choice is more morally correct, and the whole stew just cycles in my head all day long. I admit that I am scared, and lonely, and pensive, and.....and I wonder what the point of my life is on a pretty regular basis.

So, you know, just normal stuff....

M1

So sorry to hear this. I fear that you may be back in the same boat of her refusing care from you, but perhaps the medications will prevent this-i wonder if there's any way to figure that out before you commit to bringing her home? Perhaps you can spend a day or two being her caregiver on the ward? Just a thought......keep us posted.

ButterflyWings

Very sorry you are going through this. It can be totally demoralizing, not to mention exhausting, I know. DH just entered Stage 7 officially and has been at home with me throughout. I understand your feelings and encourage you to try and establish some "you" time while she is in gero-psych. You sound pretty discouraged and we get it.

Do you have any Medicare respite resources in place? If there is an Area Agency on Aging contact you can connect with in your town they will know how many hours a week you may be eligible, for in-home support. And you can always self-pay for however many additional hours needed for home aides. That has been hit or miss for me, for what its worth. Some are great, others should have a different career path, and still others just need to be more reliable. If your DW is no longer having violent episodes, home will be easier of course.

To get a list of recommended options or in home agencies, try calling the Care Counselors at Alz Assoc's 24/7 Helpline at 800.272.3900. Maybe they can help you identify some support for your hopeless feelings, too. Burnout on top of our constant anticipatory grief, is real. You matter. Good luck.

Joe C.

I am sorry you are facing these difficult decisions. I have no advice but hopefully with medication things will improve when you bring her home.

DTSbuddy

In her final years, my mom kept mistaking my stepdad for her mother, really seeing visions of her mom. I knew that she felt bad that she had not been as attentive to her mom as she might have been, and felt some guilt. I tried helping her create some new memories. I told her repeatedly what a wonderful daughter she had been, and how she had cared lovingly for her mom in her last years, And her visions of her mother lessened. I had read somewhere that you can enter into the hallucinations, and help your LO deal with old feelings that keep bothering them.

Now 30 years later, my husband has aphasia, almost no language, he rearranges things constantly, and needs help finding the toilet and washing. I experience what you call 'the normal stuff' too.

We are staying home, and we have had occasional episodes where he rejects me. I believe that they were responses to my own anger with the situation. So, I focus on remembering that I love him, keep it light, respect his ability to take on some responsibility, and find things that make us both smile. Playing music that gets us dancing a little, looking at videos or pictures of favorite people, calling someone he likes and whose voice he recognizes, watching birds, sunsets and airplanes. Or offering food or a walk. This is especially difficult at 3 AM or when I'm feeling under the weather or trying to get anything else done.

Take care of yourself.