Seeking thoughts on timing for MC

mroberts8 · May 13

I've been the sole caregiver for my 79-yr-old DW for almost five years. (I now have aides two mornings a week.) She has ALZ and vascular dementia, probably now in late stage 5 / early 6. The past six months have seen a sizable deterioration. There may be "silent seizures" involved. She is still fairly healthy physically, but needs verbal direction and some help for almost everything. She is starting to do more odd, random things, so 24/7 monitoring is the latest twist.

I'm seeking thoughts from this community on best timing for a move to MC. Experiences with waiting too long? Experiences with making the shift too soon? Milestones in the disease progression (or caregiver's burnout) that often signal this is the time for such a move?

I'm normally pretty rational, analytical and a good problem solver. But exhaustion and the complexity of issues and emotions make this a tough one to consider clearly. I know each case is unique, to a degree. Any and all input is most welcome. Thank you.

blacksparky · May 13

I’m thinking that when it’s time to place my DW into MC, I will know that I can’t take care of her better than a trained staff at a MC place. When that will be is still up in the air. Besides knowing when I have to consider the financial side of it too. I wish I could tell you exactly. You’ll know when.

annie51 · May 13

I often read that the major things that caused people to choose memory care were wandering/elopement, and extreme aggressiveness. When a caregiver feels that their LO is not safe or when the caregiver feels unsafe, this is a trigger. For me, I could manage the wandering most of the time, although it was exhausting. It was his aggressiveness toward me that pushed me over the edge, because I feared for my safety. My DH was probably mid to late stage 6 when I decided he would get better care at MC, and there was definitely some truth to that. It’s hard, very hard, to make that call but it turned out that it was the right time for my DH as he seemed content there, enjoyed seeing me visit, and got very good care.
I think part of my decision was the result of the type of person I am - very emotional, extreme worrier, hates conflict. I could tell that the stress was reaching a breaking point for me. I felt so much relief when the “heavy lifting” was turned over to the MC staff, and I could now become his wife again and his advocate, instead of his nurse.

Good luck to you. If you haven’t already, begin touring places, talk to references and choose your favorite so you’ll be ready if and when the time comes or if an emergency comes up with you where you cannot be her caregiver any longer.

SDianeL · May 13

24/7 monitoring is sometimes the trigger unless you are able to hire 24/7 care. Trying to care for someone 24 hours is extremely difficult. When will you sleep? Will you really sleep? Other triggers are: total incontinence, or if your LO becomes bedridden. Many facilities have waiting lists so you should choose one and get her on the list. We say here that if you’re asking, then it’s time. 💜

terei · May 13

Are you sleeping? Are you well rested and mentally prepared for her care every day? I would more caution waiting too long before placement. It has been my observation that it is very very rare for caregivers to believe after the fact that they placed too soon, but exactly the opposite. Caregivers become acclimated to conditions/stresses that are, from the outside, overwhelming but the caregiver is not seeing their pressures objectively.

I agree, if you are asking, it’s probably past time.

RickM · May 14

Great advice given above.

I’ve often heard: “6 months before you think you should”

❤️

notequipped · May 14

https://alzconnected.org/discussion/76024/seeking-thoughts-on-timing-for-mc

In my parents case, I thought it was OK with the two of them at home. My Dad had COPD with some resultant physical limitations, my Mom had MCI. As a team, I thought that it worked. The problem was that my Mom was unable to recognize when my Dad had a medical emergency. Even if she had been able to recognize it, I didn’t know it at the time but I don’t believe that she would have been able to call 911. It was a less extreme version of what happened with Gene Hackman and his wife, although my Dad did pass. Do you check in with others frequently enough that someone would recognize that something was amiss if something were to happen to you? Apologies for a completely different and somewhat morbid perspective. I didn’t see it coming. I didn’t realize that my mom had progressed that far.

blacksparky · May 14

https://alzconnected.org/discussion/comment/272420#Comment_272420

I’m the sole caregiver for my DW with EOAD. The other day I was in the restroom and I forgot to bring the only phone we have with us. My DW answered the phone and couldn’t respond properly to the caller which happed to be her step mother. I never realized that she even answered the phone. The next thing was a couple of calls from her sisters to check and see if I answered the phone. I did and before I let everyone know I was ok, I hear a knock on the door and it was the PD doing a welfare check. I now carry my phone with me always. 😳👍

harshedbuzz · May 14

@mroberts8

FWIW, I would add fragmented sleep and incontinence to annie51's list of reasons to place.

If you're considering it, it's likely time.

My auntie was placed fairly early on as she was a childless widow whose sister, 75 years old and still working fulltime, stepped up to be her be guardian. I'd say auntie was early stage 5. She positively blossomed in a nice MCF. she enjoyed the social piece and activities (she typically mixed with the AL folks at first) and did really well. It felt like the move slowed her progression the first few years.

My dad was placed later than I would have liked. His care about killed my mom who was neglecting her own care because, even with my help, she was overwhelmed. This resulted in an issue that cost her the vision in one eye and driving. Her stage 8 is not what she'd hoped for and frankly driving her to her various appointments is not the retirement I envisioned. Prior to moving them back to the area, we had a similar situation to notequipped's. Mom was gravely ill with liver failure and dad didn't notice she was the color of a schoolbus. I got a call a few days after she was admitted to the hospital from the hospitalist who tracked me down. I'd already had police do an in-person wellness check, but dad conflated some cockamamie tale of mom swimming with her friends, and they assured me all was fine.

Fortunately, dad was placed while he was still ambulatory and self-feeding as many MCFs will not accept new residents who aren't. If your PWD has a fracture or stroke you may only have a SNF as an option. Generally, these are more expensive and lack dementia-informed activities and care programs.

HB

Jilkel · May 14

I placed my DW 2 months ago. The reason it was the right time was that Ihad become burned out, was forgetting things myself, couldn’t sleep and was afraid I was going to get so run down I wouldn’t be able to function. I had plenty of help from our support system and 20 hours per week paid help. In comparison to many others I was very fortunate. But it wasn’t enough. IVe been in caregiver mode for 10 years, 3 for my wife’s cancer and 7 for her dementia. I just plumb wore out. I always thought it would be “time” when I couldn’t handle the physical burden or if she became aggressive or wandered if. Instead it was my own health that was the trigger.

lenbury · May 15

Over 2 years ago I thought that MC was the answer for my wife as I was exhausted and she was wandering at night. We had a 12 day stay at a facility and it did not go well but it made me realize that there were other options. She came home and I brought in caregivers at night to allow me to get sleep and perspective. Gradually we were able to transition to caregivers for 4 hours in the morning. This was fine for a year but when she started sundowning I knew it was time for more help and we moved to assisted living and then memory care. I don’t think there is any one answer to the decision but it is wise to explore all options. Best of luck and Godspeed.

[Deleted User] · May 15

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H1235 · May 15

I think a home comes with so many obstacles and dangers that are not there in a memory care setting. The stove, cleaning products, stair are all problems. In addition there are all the reminders of things your loved one might want to do (even try to do) that are dangerous or would cause them frustration. They may see their favorite cookbook and want to make banana bread, decide they need to put a coat of paint on the old swing, decide the closet needs to be cleaned out and get overwhelmed. Just in case you’re not aware, some facilities can have a waiting list. Even if you decide it’s not time to move her yet, it’s definitely time to look at your options, ask some questions and get her on a waiting list.

Arrowhead · May 16

I placed my wife 2½ years ago and sometimes the house and I still feel empty, and sometimes I stlll get lonely. At times I wish I had kept her home longer, but then reality steps in. I remember how difficult and time consuming it was taking care of her. Changing her clothes and diapers, and trying to bathe her were almost always a battleground. Twenty-four monitoring put an additional strain on the situation. After placement you will get second thoughts and sometimes regrets, but in the end you’ll realize you did the right thing. One more thing, if you are questioning if the timing is right, it probably is.

Lilydaisy · May 21

https://alzconnected.org/discussion/76024/seeking-thoughts-on-timing-for-mc

Your comments resonated with me. My DW is at about the same place, age 75. It's been 10 years now. I think a move can be too early if you and your wife still have a relatively good relationship, if you can handle her needs at home (with or without help), and if you don't want to spend money before you must. But because her condition could change quickly, I suggest she be on a waiting list in that event.

All of this is a bit of a crap shoot because of unknowns. We are financially comfortable, but we don't have unlimited funds. I am taking a little more risk than I want, but it still feels like her home is still the best place. Good luck to you.

BPS · May 21

I think when someone gets to early stage 6 (or maybe sooner) there really needs to be a plan B. Get on a waiting list or know who would be willing to take over in case of emergency. I had just started looking at MC for my wife when she had a stroke that affected her left side. She was stage 6 at the time and I could still care for her, but she was always mad at me due to some delusions so I was thinking about placement. That added to her need for care so she moved straight from rehab to MC. That was over two years ago and she is in mid to late stage 7 now. That stroke could have been me and if it had been I don't know what would have happened. Make the plan and then you can pull the trigger when your ready now or later.

tboard · August 22

https://alzconnected.org/discussion/76024/seeking-thoughts-on-timing-for-mc

I waited too long to move my DH to memory care. The good news is he wasn't harmed by it but I was. It is hard to know when to move them. I waited until I was totally exhausted. I would say he was in early stage 7. he is now in a later stage and on hospice care. He never questioned the move to MC.

Lethe · August 22

https://alzconnected.org/discussion/comment/272423#Comment_272423

I could see that scenario playing out here. I’m glad it all ended well.

dts10 · August 26

https://alzconnected.org/discussion/76024/seeking-thoughts-on-timing-for-mc

Hi! I'm in the exact situation you are. Alz/VD, at least 7 years out now, that I know of, of course. My husband is still physically capable but most days can't remember anything for more than 5 minutes, if that. I have anxiety attacks often, most mornings. I just can't take the shadowing, the clingingness, the constant talking/chatter/questions. It's just gotten to the point where I can't breathe sometimes when he comes near me. I have an aide twice a week and just found an adult day care center near us. Getting him signed up for para transit to get him to and from. It helps but it's just not enough. I'm still responsible for him 24/7. His care is constantly on my mind and it's never ending.

Assisted living has wait lists. They're building a new Brightview very near our house. It's expected to open in a year. I spoke with my DH psychiatrist and he confirmed the appropriateness of the timing, educated guess, of course. Everything just seemed right so I made a deposit. Once the decision was made, I felt like a hurdle was passed and I knew it was right. And I know I have to prepare for what comes next…moving. We have time to transition and the facility has a lot of welcome activities planned so the "community" can form. It will give my DH time to get acclimated and feel more comfortable.

I don't know what will be but I have a life too. This way, I can visit every day, take him out, whatever, but relieved of the stress of constant daily caregiving. I'm praying it's a win/win for both of us and I can be a more loving wife to him as opposed to his baby sitter.

Dio · August 27

The original post was back in May, so I wonder if there's an update on your decision. IMHO, if you're asking, then it's time. I was advised to start looking and vet places way before you need to move your LO. And so glad I did.

RickM · August 28

https://alzconnected.org/discussion/comment/281007#Comment_281007

Same here. The rule of thumb I heard was “6 months before you think you should”.

Seeking thoughts on timing for MC

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