Still waffling on MC placement

annie51 · September 18

After touring MC facilities for my plan B, I started thinking that maybe DH would be happier and better cared for if he was there. There are a few reasons for this which I won’t go into but I haven’t made a decision yet. I am not good at being decisive - ironically that was one of the things that attracted me to my DH at the beginning. But lately I’ve been daydreaming about the things I could do for me if I was no longer 24/7 caregiver (getting a cat is first on the list 🙂). Then I start feeling selfish and guilty, especially when I read about some of you who’ve been doing this for many more years than I have. It’s just so hard to know what’s best for him, and that’s the most important consideration. And will the guilt and regret be too much for me? So many feelings wrapped up in this dementia mess! Thanks for listening.

Milo4455 · September 18

It is the emotional roller coaster ride, the not knowing, the fear of making the 'wrong' decision for our LO. The fact that the calvary is not coming. The fact that WE were once a unit, two peas in a pod, someone to SHARE everything with. Someone on this forum suggested that they weighed the pros and cons, thought on it diligently, made the decision, and didn't dwell afterwards and also didn't allow outsiders to 'judge'. It's different for everyone. Doesn't matter how many books we scour to 'find' answers, there are no right, or wrong answers. All we have is the best we can do. I'm pretty sure the MC road is in our future too, and dreading it is an understatement. Praying helps me a lot in this journey.

CindiEC · September 18

I promised myself I would keep my husband home. It worked for a while. As he got worse I become completely overwhelmed and depressed. I had help in house for a while but it was actually more stressful. My son told me “ Mom it feels like we are losing you too”.

I started looking at MC. The one I chose turned out to be a bad fit. More guilt. I found another facility better suited. ( he was past the point of being able to participate in activities and is much better in a small (10 bed) facility that is quieter.
I know I am lucky to be able to afford the MC.
I will feel guilty for the rest of my life for “abandoning” him, but I would make the same choice again.
Good luck to you. This is a terrible disease.

Colacho10 · September 18

Life can lead us to such difficult situations, and it is normal that you can't deal with your emotions. Caring for yourself isn't selfish. It is, if I may say so, more clever in the long run. That way, you will be able to care for yourself and others, including your husband. To help with the decision, you can make a list of what's best for your husband and what's best for you. You may find those lists overlap more than you think.

If that doesn't help you, maybe a few therapy sessions can be useful to sort through these difficult emotions and practical options. Hope you feel better

cdgbdr · September 18

Annie51

I experience all the same feelings. My DH was placed in MC September 3rd. I second guess myself for all the reasons you mentioned, but I followed through as home care giving fell apart and I still work with no desire to stop. It's hard but I deal with it day by day. It's not selfish but we're prone to feeling that way.

cdgbdr · September 18

CindyBum · September 18

Annie51…you and I are about in that same indecisive and guilty place about placing my DW. So many others have it much worse and are hanging in there, but I just had another full night of a wandering wife keeping me awake all night and I think, "how long can I do this?". It's only been 3 times so far, if you want to know the depth of my lameness. She's still up now and full of energy somehow and I just want to run for the hills and never come back. Stage 6 is no joke

I'm about to make appointments again at a couple of MC facilities. Perhaps I'm better prepared to handle that now than I was 6 months ago.

PlentyQuiet · September 18

For various reasons we are planning to keep DH at home until the end (currently on hospice). He is about halfway through a two week respite because I was breaking under the caregiving load.

Hospice has been checking on him and there is nothing but positive reports about how he is doing there. If it were financially doable I think I would make the move for it to be a permanent placement.

Maybe try a respite stay and see how he does. And how you do. Also remember that nothing is a final decision. You can change MC facilities, or even bring him home again if things are not working out.

But start with a respite stay and see how it goes

annie51 · September 18

https://alzconnected.org/discussion/comment/253882#Comment_253882

His wandering is one of the reason I’m thinking about this. I lock the special locks at night but keep them open during the day. He is constantly going out the front door and every time he does I have to check to see if he’s walking away and I have to chase after him. Hard for me to use the bathroom, cook, or anything else. I don’t feel right locking him in but it’s hard keeping track of him all the time. My favorite MC has a walking path all around the building that the residents can access on their own anytime.

annie51 · September 18

I think a respite stay is a good idea. The MC offers a “trial month” before you have to pay the community fee. I’ll definitely look into that. Thank you @PlentyQuiet for reminding me it’s never a final decision.

harshedbuzz · September 18

@annie51

I toured a dozen facilities ahead of crafting my Plan B. Most of them touted an outdoor area as a selling point; in the free-standing MCFs this area tended to be as you describe— a secure landscaped area that wraps around much of the building. IMO, this was a poor design as there were blind spots where a PWD could fall or be assaulted without anyone seeing.

IME, these were never accessible at all times. LOL, I checked the doors when I toured. Because the residents need to be protected against sunburn, extreme heat, cold and well checks need to be done in the outdoor area every 20 minutes while accessible, they rarely are. When the weather was nice at the rehab/SNF dad spent some time in, family could ask to bring their LO outside with the assumption we'd be watching to keep him safe.

HB

l7pla1w2 · September 19

I'll second what @harshedbuzz says about enclosed areas. My wife's MCF has one. I was originally under the impression that residents could go outside whenever they like. However, the doors have coded locks, so most of the time the residents can't go out on their own. I usually like to take DW outside in nice weather. The staff sometimes let residents out, but they keep an eye on them. Falls are a particular risk. Remember that PWD often have poor thermal regulation, so even what seem like moderate temperatures to us might be too cold or too hot for our LO. When I visit, I'm wearing shorts and a tee shirt, but DW has on long pants and a long-sleeve shirt.

sandwichone123 · September 19

My dh's memory care is in three buildings, to accommodate changing care needs. Buildings 1 and 2 shared a the walking paths and when he was in building 2 he had direct outdoor access from his room (which was wonderful). Now he's in the final building and the "walking paths" are more of a large courtyard, making it much easier for staff to monitor, but I've never seen or heard of the access being limited.

We're in the high desert, meaning heat is a risk but snow, ice, and slipping are less so.

Maru · September 19

My DH is not ready for Memory Care, but I am making plans now. My children have expressed that they are worried about me and the toll that this is already taking on me, even though DH is only Stage 4 or so. I read a reputable source that said that 40% of caretakers die before their LO. Maybe "selfish" isn't selfish but survival.

jfkoc · September 19

Best for him and best for you.

Your husband is not going to get the care that you provide at home. It willbe different and you will worry about it.

You will be making trips to the facility where there is nothing to do.

Medical problems will arise that you have little to no control over.

Will you have free time and a cat? Absolutely but you can have free time if you add in some help. Still no cat…sorry

harshedbuzz · September 19

My dad didn't get the care he got at home.

It was better in his case. He was willing to allow his team of caregivers, who he saw as professionals rather than a nagging wife, help him. He ate better, took his meds as prescribed and even showered. As a bonus, his nagging wife was able to go back to just loving on him and being with him on visits instead trying to get him to brush his teeth or change his Depends.

Mom did hire caregivers before moving dad to MC. It wasn't great, often dad refused care from the visiting aides if mom was in the house, so she didn't get much of a break unless she left the house when what she wanted was some peace and quiet in her own space to recharge her batteries.

I think the respite stay is a good trial run so long as you give your DH time to acclimate to the MCF.

HB

Still waffling on MC placement

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