Memory Care or Keep trying at home

Rosanne77

Is there some magic way to know when the time is right to have your loved one in a Memory Care Facility? A tipping point? I don't want to, for some reason. But I'm exhausted . I feel it would be more for me than him if he went there. Is that the right reason? He is still considered early stage. But the care needed is overwhelming. Just toileting needs alone, on some days, is a full time job. His world is getting smaller and smaller and by default mine is too. Friends come to our house, but he rarely wants to venture out as a couple. And visits can only be late morning to about 3 when his sundowning/anxiety usually starts to amp up. I miss our life. A year ago, i would've been hopping in our car to go visit our new grandson, whether he wanted to come or not. He would've been okay with that too, because he always had a project or something going on. Even though things were happening for him then, medical-wise, that we/I could seem to rationalize (blame it on one of his scripts, or his chronic pain is flaring up…long list. Looking back we see many red flags that we just kinda, as a family said, oh that's just the way your father is. Official diagnosis was this past January. When I read that some people on here have been dealing with this for 7+ years in some cases, I just can't imagine it. Where do you get the strength? I'm sure the answer will be "it's a personal choice", but I value your advice. I don't want to add another layer of sadness to my DH life by moving him too quickly. Everyone in my family (my siblings) feel I should start looking now. My kids will follow my lead. Love to hear from anyone who might shed some light on this for me. Thanks for listening!

midge333

What you are describing does not sound like "early stage" dementia. We are not all cut out to be caretakers. Some of us have physical and emotional limitations that impact our ability to cope with caretaking. If you are exhausted, then you should consider placement for your DH to preserve your own health and well-being.

JDancer

By what measure is this considered "early stage"?

Jeanne C.

I think it's wise to tour facilities (without your husband) now to at least develop a backup plan. Things can change on a dime. Even though I am caring for mine at home (with the help of an aide and hospice staff), I picked out first and second choice facilities in the area just in case.

You say he's early stage, but progression can speed up and slow down. There's no shame in placing him when you're ready. I'll be blunt. He's never getting better. You still need to take care of yourself.

ThisLife

Your descriptions do not indicate Early Stage. You state the official diagnosis was in January. Diagnosis is difficult to obtain and many PWD are well beyond early stage. Doctors use a scale of Early Stage, Moderate Stage, and Late Stage. By your description your LO is not Early Stage on the is scale.

Most Caregivers find Tam Cummings seven stage scale (DBAT) useful. Search on here for the DBAT. I do not think your LO is in early stage.

M1

nor do I. There’s another similar thread this morning from tryingtosurvive. It is not too soon if you’re burning out. I promise you (we’re now in our third MC year) that you can still love and care for your DH after placement. At the very least I get to sleep at night.

jfkoc

Always a good idea to have Plan B at the ready. We can help you with what to look for when you are ready.

mrahope

I think the toileting issues are something that usually occurs later in the process. I will say that I placed my DH before he had any such issues. OTOH, I was quite literally afraid of him when he would get into rages and begin throwing small objects. It got so bad I had to sleep with my car keys under my pillow to keep him from attempting to "escape". YMMV, but if you are having that "burnt out" feeling, it may be past time.

Quilting brings calm

start looking now. That way you will be prepared. FYI- being exhausted is a perfectly valid reason for placement. As in any number of others:

House isn’t set up for someone with his needs. There are stairs or the location means he could be unsafe if he wanders outside. You can’t be home 24/7/365. Even then, you have to sleep sometime. You work, or have health issues, or grandchildren that you want to see. Or - you just aren’t cut out to take care of someone 24/7.

Many of the caregivers here have had to come up with alternate arrangements immediately because they had surgery themselves, Or their spouse became unmanageable( knives etc were involved).

Bill_2001

Hi Rosanne,

Toileting issues are at least mid-stage to late-stage. Your loved one is most likely further along than you realize.

You need help of some kind. Memory care is very, very expensive. Medicare is no help, and Medicaid covers nursing home care, not strictly memory care - and there is the required spend-down. We are truly on our own.

My dear wife is late stage 6 (on the 7-stage model), and she is still home with me. I am 8+ years into caregiving. I take her to an adult day care several days per week. There are days when I feel I can do this forever, and there are also days that crush me and I just want to give up. We all have different gifts and tolerance levels. Only you can decide if you truly have reached your limits.

I have postponed memory care so far — but only time will tell when I can no longer do it. Even if you have a support system of family and friends, the lion's share of the work falls on us. I am often still shocked to discover how there is virtually NO real, tangible help for caregivers of people with dementia. The only "solution" our medical system has come up with is to rent our loved one a $10k per month room, and caregivers still must visit nearly every day to be sure all is well.

Sorry, rant over. My dear wife has had a bad week and I am nearing my wits end as well.

Vitruvius

Several items to consider:

1. Our first choice MCF had a waiting list but if you got on it and your name got to the top, you could pass and stay on the top. But even then, rooms only came up every few months. Point being that if a crisis arises it may be awhile before you can get your DH into a MCF. Better to be a bit preemptive and do it before some critical event.
2. I am a "poster caregiver" for possibly waiting too long. The stress of care was building up but I was "strong" and held it off. When a minor crisis came my DD urged me to place my DW, fortunately a room was just opening up at our first choice place after almost needing to place her at a lower choice. But then as I no longer needed to be "strong", my body "gave up" just after placing her and the impact of the stress showed itself, I developed a potentially fatal disease. It took several scary months to get stabilized.
3. My DW adapted immediately and never questioned being suddenly in an MCF. She was declining rapidly and it wouldn't have been long before she needed far more care than one person could provide anyway. Now after 22 months she is in Stage 7e (according to hospice). She requires a very high level of care with hoyer lifts, hand feeding and frequent visits by her hospice nurse.
4. A woman who place her DH recently at our MCF also worried that she placed her DH too soon. He was not nearly as far along as my DW, he could still do many of his ADLs, but he was much older, mid 80s (my DW is 72). His care quickly escalated to the point that this woman would have been overwhelmed .

These are of course merely my experiences but I hope they give you some info that is useful.

SDianeL

If you are exhausted and overwhelmed, it's time. It will take some time to have him admitted if there are waiting lists. I had planned on keeping my husband with me as long as I was physically able. I'm 76. In December I was diagnosed with a rare form of aggressive breast cancer and had to place him quickly. It took 2 months to have him evaluated and placed and then they were only willing to accept him for 30 days at a time for respite care. He had no other family members that could care for him. Things can change quickly so have a plan A & B ready. Read the behaviors in the 8 Stages and you will see that your husband is farther along than you realize. If your children support your decision, you should highly consider placing him. The facility will help you with placement. The facility where I initially placed my husband recommended we not visit for 2 weeks until he settled in. I did move him to a VA facility which is much better. The other facility had mostly women and it was dark & not cheerful. My daughter and I did tour it but didn't notice that then.

Rosanne77

Thank you all so much for your insights. I'm so glad to have this support. Many say he does not sound like early stage and I agree. He had a spinal tap and the Neurologist told us that at his appt. The spinal tap was done for another possible condition, NPH. Which affects his gait and walking. While doing the tap for that, the diagnosis was Alzheimers and mire testing needed for the Nph. Although, not what I was expecting to hear, it explained a lot of the behaviors I had been seeing for more than a year. Based on everything I've read today, I will start looking into facilities. Luckily, years ago, our financial planner recommended long term care insurance. I'm so glad we have it. My siblings seem to think my husband will be happier if he's placed. As he seems to like having aides here and having their total attention. I just have memories of my mom in a nursing home, and she just didn't get the quality care I felt she deserved. I also know I need sleep, though! Or I won't be good to anyone if I get sick. Thank you again.

Rosanne77

https://alzconnected.org/discussion/comment/217355#Comment_217355

I appreciate your reply, as I can see you lost your DH a short time ago. This group must still bring you comfort and your insights are very helpful to those of us who are still navigating a road we hoped to never travel. Thanks

PS67

https://alzconnected.org/discussion/comment/217355#Comment_217355

Thanks, ThisLife, for writing about Tam Cummings scale.

tboard

https://alzconnected.org/discussion/70058/memory-care-or-keep-trying-at-home

https://alzconnected.org/discussion/70058/memory-care-or-keep-trying-at-home

I am asking myself the same question. I am exhausted. DH can not be left alone and he has forgotten how to do many things. He needs help getting dressed and hasn't bathed or showered in more than a year. I feel as though I am reaching the end. He stays up late and gets up early and rarely naps. He spends most days obsessing over many things that neither of us can control or that happened long ago. I used to be Abe to distract or redirect him but that doesn't work any more.

Rosanne77

https://alzconnected.org/discussion/comment/218988#Comment_218988

I'm so sorry to hear about what you are going through. Just this week, I ended up getting placement for my DH in a memory care facility. It was a very, very hard decision. He will be transferred from the hospital directly there. I know it's the right thing to do, but my heart is still breaking over it. I hope you can find a way to get some help and some peace. I'll be thinking of you.

elainechem

My rule of thumb is, if you're starting to ask the question, then it's time. Start looking at memory care facilities. Talk to an elder care attorney about Medicaid planning. I'm so sorry that you're at this point.

LaneyG

I struggle over the same question. I have deposits down in a couple of places to keep him on a wait list. I “think, pray, hope” that I will know in my gut when it’s time. I’m not ready to give up the battle yet but the time is getting closer.

Rocky2

MC placement is a difficult choice for most. In my case, my head knew it was time. Yet, my heart screamed "NO"! We tell ourselves that our loved one will be better off, happier, and better cared for at home. And we rationalize that we can hang in there emotionally and physically. These are often not true. IMO, placement into MC at some point, at least for many of us, is the best choice for both the PWD and for the caregiver. Hard, yes. But best. We don't stop being a caregiver and advocate after MC placement. And certainly we continue to love our PWD. MC just adds to the team of caregivers and can be best for all involved.

tboard

https://alzconnected.org/discussion/comment/219058#Comment_219058

That must be very hard. I will also be thinking of you.

Arrowhead

My wife is in memory care with the help of a long term care insurance policy. You and I are blessed/lucky to have such a policy, which very few people have. Since financing is not a roadblock, I encourage you to take advantage of it. If you keep him at home, it will wear you out to the point where you will no longer have the strength or energy to give him the care he needs. After placing him, there will be times that you will wish you hadn't because of how much you'll miss him. At those times, you must remember that having him there is better for both of you.