Planning for placing EOD LO

Belle

My DH has neurocognitive disorder caused by an autoimmune disease. He also has a myriad of other health issues ranging from pretty severe heart disease, difficulty ambulating due to neuropathy, adrenal insufficiency, and more. He is in his late 50's and was diagnosed with dementia 15 months ago but has had cognitive issues for more than a decade. This past year I went on vacation without him and while I was gone he didn't shower or eat on a regular basis. That was the first time I realized he can no longer be left alone for more than a day. He will sometimes leave car doors open, doesn't lock the house up, he cannot manage anything financially, short term memory is shot, can't pay attention to conversations, doesn't always flush the toilet, angers/gets irritated easily. Guessing he is about stage 4-5 looking at the ALZ scale.

Our house is not accessible and DH has, for years, refused any changes that would make it so he can stay here if he became more disabled. I have told him repeatedly, for a decade or more, that if we didn't update the house he would have to go to assisted living some day. I never said it as a threat but as a fact to try to get him to consent to getting the updates made. Anyone working in the house at this point would make him angry and it may even take too long for when the changes are needed. I do not want to sell my home, we have pets that I am not willing to give up, I am young enough that I can still manage a house. Bottom line for those reasons and many others I haven't discussed, at some point he will need to move to assisted living or memory care.

Besides deciding when would be the right time to move DH, what I am really, really struggling with is guilt. I met with a geriatric care manager recently who gave me a list of places to visit and I am dragging my feet to even make appointments to go on tours. I have to have a plan in place because if something happened to me first he cannot live alone and none of his family are even remotely interested in helping him. But the guilt and anticipating the anger from him is stopping me from going forward and getting a plan in place. I'd love to hear from others who had to plan a move to a care facility, especially if your LO is younger, how did you get past the guilt and (my own) denial that I am needing to do this?

Jo C.

Hello Belle and a very warm welcome to you. From your writing, I can certainly see you have a host of significant challenges you are dealing with and have some very important decisions to make. I am truly sorry for the stress this is causing.

As for screening care facilities, if you do not yet feel emotionally ready to make an in-person visit, if you have not already done so, initial screening of facility websites can be done online in the comfort of your home. When you see something you feel is possibly a good match, then you can prepare yourself for an in-person visit.

Try to think about the visit not as a demand MUST do right now; but rather gaining knowledge for a future need. No one says you must place immediately; but knowledge really is power and once you visit, then you will have more knowledge and possibly even feel more positive and comfortable. Also, admission to a care facility can be reversed if you should ever feel you want to do that and have him return to home again; it is not a permanent decision if you do not wish it to be.

NOTE: Also, rather than pinning the word "guilt," upon yourself; why not use the word "regret" instead. You would not be having to make such a decision if it were not necessary; so regretting such a need is well understood. (I've been there.)

When placement is made, not only do our Loved Ones have an adaptation period, we carers also have our own adaptation period to move through. What I have found interesting is that after our LOs have adjusted to the new setting, many of our LOs actually do better emotionally and physically in the setting that takes away insecurity and need to perform. This often brings comfort and anxiety induced irritability and upsets can disappear or be much less. The care facility days will have the all important structure and routine to them which is a comfort; home based triggers are gone, there is increased socialization and activity if desired to whatever degree the person feels comfortable with. There is also 24 hour staff so there is always someone at the ready even if our LO has active nights. Tincture of time will tell us much. Admission is NOT abandonment; it is doing the best for our LOs who have great need. We do something for them, not to them. We also continue as carers, just in a different way by continuing to be their advocate and can visit as much as we wish to. Once again you can be the loving wife with all the dreadful impact of the overloaded, overwhelming caregiving which had reached its inability to continue. And . . . he is safe.

It is true; your husband should not be left alone at all anymore. He would be a danger to himself and cannot process matters correctly and in good stead. Would he know what to do if fire broke out, if someone got into the house, If he fell or became injured how would he get help? Would he know how to use the phone to obtain 911 assistance? Is his safety compromised because of the house no longer fitting his capabilities? Another concern would be his ability to use credible logic and judgment during the course of a day or even a few hours if alone; probably no longer fully capable. Seems from what you have written, that ship has sailed some time ago.

I do understand the feelings making the placement decision and actually putting the first foot forward in assessing and beginning to make future plans. It was probably one of the most difficult things I ever had to do, but so surprising when it turned out much better than I thought it would - that truly was a surprise and a huge relief to say the least.

This of course is only one person's experience; please do keep in touch and let us know how things are going; we will be thinking of you.

J.

Dio

I think Jo C. covered everything already. I wish I had access to this prior to placing my DH. From reading prior posts on this and other support group sites, it was clear that being prepared is of utmost importance. And it takes time to find the right facility for your LO. You don't want to be in crisis mode when it's time to place your LO. As for the guilt, I had to deal with that, too. I kept a journal and listed all the behavior and reasons my DH needed to be placed. When guilt knocks on my heart, I'd turn to the list and be reassured that I made the right decision. I don't know if the guilt will ever go away. But the list helps to alleviate some of it. I just hope that in time, I will also adapt to the new normal and that the guilt will subside. Good luck. Many of us have gone through this and survived.

Belle

Thank you Jo C and Dio. I do need to change my thinking about this situation. Reframing the next steps to call them regret is helpful. Also making a list of 'why' is a great Idea. When talking to a new professional and explaining his issues and what he can no longer do makes me think, yes, this is the right path to move forward for care. When it's just DH and I and he sounds like his old self then my brain wants to think 'nah, he's OK, just a few glitches'. I need that list/journal to refer back to so I don't keep trying to convince myself this isn't happening to him.