Ready to place but then he seems normal

Just Ro

Yesterday morning at 6:15 am,  despite all of my safeguards,  my DH “escaped.”  I had been asleep, but my cameras alerted my cell phone that he was in the driveway. Quite often he does go out the front door, tries to get in my car, and when he can’t, comes right back in the house.  I keep my eye on him the whole time on my phone to make sure he doesn’t get in to any trouble. Yesterday, however, instead of coming back in the house, my cameras detected he was walking down the street.  Not wanting to go outside in my pajamas, I quickly put on some real clothes, shoes and jacket, confined our dog so she wouldn’t run out and then went out to get him.  Long story short, he had literally vanished in the few minutes it took me to get outside.  After driving around a bit looking for him, I decided I was wasting precious time and called the police.  They found him about a mile away on a busy street by the train tracks.  He was safe, but I was a wreck. When I asked him where he was going, he told me he had to go to work at the local high school and since I wouldn’t cooperate with him by letting him drive, he would just walk there!! For a guy who can barely walk sometimes, it was amazing how quickly he could vanish.  I know, I’m lucky nothing bad happened.  I am very careful, I do watch him constantly, but I do need to sleep.  I feel  like I can’t keep him safe anymore and I am completely exhausted and beaten down trying to keep him safe and attending to all of his other needs. Pretty sure that speaks for all us caregivers.

He is on medication, which has recently been increased, but he continues to wander, have hallucinations, be delusional and is incontinent. After all of the drama yesterday, I decided it is time for placement.  I planned to call all of the memory care places I had previously checked out to see if they had a vacancy.  Today, he seems almost NORMAL.  This is what happens.  This is why placement is so hard.  Now I don’t know what to do, again. I know “almost normal” won’t last, but it would be so much easier to make the placement decision if he was completely out of it all of the time. 

harshedbuzz

Care decisions are made appropriate to the PWD at their worst not when they're enjoying a good day.

loveskitties

So sorry for the scare you had in locating your wandering hubby.

I am not a spouse but a daughter of someone who has dementia.  Wandering is the thing I fear most as their safety can be compromised in a second.

My dad also has "good days" and "bad days" which keeps my mother on the same see-saw as you are on regarding level of care needed.

I am of the belief that you have to consider the worst days as your guide to placement.  You never know when they will occur, but just knowing the next one could compromise their safety is validation enough to do it.

Wishing you the best as you make this difficult decision.

Just Ro

Thank you, I needed to hear that.

Just Ro

Thank you so much for your kind, sensible reply.

Paris20

Take a look at the post entitled “Whiplash.” I replied to it yesterday. It describes how caregivers are jerked back and forth between good days and bad days. It happens within the same day too. There are certain bad-day behaviors, however, that indicate big trouble is ahead. I find that once a new symptom appears, it increases in frequency within a relatively short period of time. I have mental notes about what would lead to a memory care placement. I also have a list of local facilities in my head. My uncle, who had early onset Alzheimer’s, made his wife promise never to put him in a “home.” I saw what it did to her and vowed never to make that promise.

Ed1937

You have some very good thoughts above. No doubt it's much easier to give advice than it is to actually implement good advice. Just make decisions with your brain instead of your heart.

Cynbar

It's time to pursue placement, for his safety and your health. Wandering can be life threatening, there was just a story today about an elderly woman in my area who wandered off and was found dead in a swamp near her home. You don't want that to be your husband's story. You can't watch him 24/7, no one person can, and it's going to ruin your health if you take that responsibility on. He may have good days now but they are going to decrease, dementia is a progressive disease and it always gets worse. I think you know what needs to be done, we are all here to support that decision.

Just Ro

Thanks to all of you for your thoughtful replies. I value the wisdom of your experience and I treasure our virtual friendship.  In addition to my post on this site today, I had a lengthy phone consultation  with an elder law attorney. I told her about the recent wandering episode and she pointed out the possible legal ramifications if he continues to escape and a neighbor or someone else thinks he is not being properly cared for.  Now wouldn’t that be the final insult knowing how hard I have tried to keep him safe and well cared for.   It is very clear what I need to do and now I am much more confident in making the decision for placement for my DH. Thanks again.

abc123

Hi Ro, I’m thinking of you this morning. I hope you and DH are okay.

Ernie123

My DW had to be placed about two years ago. At the time I was in the same position as you, dealing with bad days of delusions and agitation and better days with a bit of routine and companionship that seemed manageable. But the number of bad days were slowly increasing and my brain became a snowglobe unable to make the decision about placement I was both dreading and needing. I did rely on the wise counsel of my friends at the Alzheimer’s Society, my children and my doctor all of whom said it was time. I was told it was better to move her when she still had the cognitive ability to adjust to a new environment and engage in the social activities present there. The Alzheimer’s counselor told me she would likely improve because the social interaction in a memory care unit is therapeutic and helpful for dementia patients who live in the moment. This proved true. There are just seven residents in her “ cottage” and the wonderful staff are angels keeping them occupied with crafts, music, games, group baking etc. 

My advice is making  the transition sooner is better than later for both of you. It is better to move proactively instead of waiting for a crisis that forces a move. The move will be harder on you than him based on my experience, but in the long run better for you both. Rely on the wise advice of those supporting you at this time. Good luck, it is such a difficult time.

Just Ro

Hello Friends,

After my post here, my consultation with the attorney on Monday, and my conversation with DH’s doctor on Tuesday, I, along with my children, took a tour of a new local Memory Care facility which was recommended to me by the doctor.  It is practically perfect in every way.  Beautiful, clean facility; warm and caring staff; it is affordable; and….it feels right.  I put down a deposit and reserved a room for my DH beginning November 1.  I am now in the process of getting necessary paperwork completed and getting together the needed furnishings and other essentials.  I am at peace with this decision as I realize despite my best efforts, I cannot keep him safe at home any longer. Seeing him by the train tracks where the police found him on Sunday, was pretty terrifying. How lucky we were that he was found safe and I am not dealing with a tragic ending.  Thanks again to all of you who responded and were a part of helping me make this decision.  I hope my post will help others if they are struggling with the same decision.  P.S.  Just in case I had any doubts (which I don’t now) that this is the right thing to do, my DH has tried, unsuccessfully, to escape every day since Sunday. 

Ernie123

Glad to learn you have taken these steps and are making the transition. It is a stressful time for you emotionally even though you know you have made the right decision. Stay in touch and let us know how things go. You will probably experience a “crash” after the move when the burden of caregiving suddenly is gone. You have lost your DH first to the disease and now from your home. I am sure you have friends and family you can rely on to support you during the first weeks you are on your own. In my experience after the move it was a very tough time for me emotionally but also a relief knowing that the best care decision had been made. Grief persists but with the passage of time one learns to live with it.

Just Ro

Thank you, Ernie. I’m sure this emotional roller coaster ride will continue for some time.  I do have a wonderful, supportive family and equally supportive friends who have kept me afloat during this time.  I’ll keep you posted on how the actual move in goes.

abc123

I feel as if you've made the right decision for your DH. Choosing placement for our loved ones takes courage. Sometimes we have to put our own feelings aside in order to do what's best for them. I admire you. Please know that we are here for you. Let us know how each of you are doing. I wish you the best!

Just Ro

Thank you, abc. I appreciate the support so very much.