Another line in the sand

Kenzie56

Sorry to vent...I've had quite a morning.  I know that last week I posted about DH peeing in public (no UTI) and wasn't sure what to do. I did buy a portable urinal and I have it in the car (thanks for the suggestion). This morning, I discovered a mess in our large furnace room.  DH loves to close all the doors in our home and I go around all day opening them because he never knows where the bathroom is and gets lost easily. For some reason, while I was feeding the dogs this morning, he went down to the basement (which is set up like an apartment). He opened the furnace room door instead of the bathroom door looking for the toilet. We have a tall kitchen trash can in there, soo he pooped in and around the trash can. He then tried to wipe up what was on the floor and got it everywhere.  He came upstairs without saying a word. When I discovered the mess I realized that this was one of the lines in the sand I had established for myself.  He crossed the "escape line" last March - now we are in our own lock-down facility and I thought that locks on the doors could give me a little more time. Defecating/urinating around the house is another line. I tell myself I put these lines in the sand for a reason, but then I find I move them. Am I alone feeling this way or am I pretending like this is not happening?  Today I have decided that I will not refuse the next opening in the MCF. It will take all of my strength, but living like this is slowly killing me. Reading posts from others has been encouraging, then I have a good day and talk myself into trying harder to "not fail" only to confront the fact that I am not in control, the disease is.  My heart is breaking. It seems that in the last 3 months things are speeding up.  As I mentioned before in an earlier post, I lost my home health care last month due to DH punching the PT.  I thought once the revolving door of aides stopped and increasing the dosage of his medications, things would calm down...but it is this ugly disease. I'm trapped unless I make the move to do something about it. My logic tells me one thing and my heart tells me another. I do need to place him for his well-being and mine.  Thanks for listening.

Ed1937

Kenzie, I know how hard it is to make that decision. That is a common reason for people to opt for placement. I'm sorry.

dayn2nite2

There is NO “fail” here, and not wanting to clean up adult human sh-- all over the house is NORMAL.  There is just so much a person can take.

Lills

I, too, used to tell myself the line-in-the-sand... 

One of my dear friends is an RN and was always worried about me.  I reassured her that I would place my DH when X happened or when Y happened.  I moved the line ahead a a few times throughout DH's illness.

 My DH had MANY accidents around the house UNTIL his dementia deepened. When this happened, he no longer was looking for the bathroom.  Also, by that time, he was wearing Depends and never tried removing them. Could be a phase??

toolbeltexpert

Kensie I was pretty sure I was gonna keep my dw home till death do us part. But for me there wasn't a line in the sand. I realized, my situation isn't  getting g better and I could probably cope till dw or stress killed me,  I still want what's best for her. I am actively seeking for a placement. I had refused a bed a few weeks ago, I was not ready.i am now.  I do feel for you I haven't had it has bad as most, but that behavior would have me seeking a placement as well. Your a loving caregiver you have been to the bottom floor no pun intended and the only way up maybe placement. Sending hugs

saltom

Kenzie,   You have to take care of yourself to  be able to take care of your husband. It seems to me having him in MC is a valid way to take care of  yourself.  My DH and I are not nearly as far along in the dreaded disease as you are, but we are going through some bowel incontinence and I am already sick of messes on the bathroom floor tracked down the hall.  You are not alone, and you need to maintain your health and sanity to best help your husband. Go for the MC.  From most of what I've read in these posts, placing a loved one in MC winds up being a big relief and good for the patient as well as the caregiver.

Buggsroo

Kenzie I totally get what you are saying. My husband has left many deposits of a brown and yellow nature in both kitchen and bathroom sinks, on the floor etc. I am not ready to place him because he is still somewhat “in there”. I also don’t know if he would go willingly. I have eliminated most dairy from his diet and he hasn’t noticed and he usually makes it to a toilet now. I honestly do understand your feelings and of course you have to do what is best for you both. I wish you a problem free journey ahead.

Paris20

I was agonizing over the decision to place my husband in MC, but then he had a stroke. The decision was taken out of my hands. He’s paralyzed on the right side. He’s almost completely incontinent and has no memory left. He speaks but becomes easily frustrated because he can’t find the right word.

Here’s what I concluded. I had also been redrawing the line in the sand. DH’s outbursts, his incontinence, and our home becoming like a prison kept me from thinking clearly. We could never go anywhere because he was like a toddler. Now I visit him almost every day but I spend two hours with him at the most. His incessant whining, whispering, complaining, and pooping in his pants often lead me out the door. At home I was trapped. Now I can take a little ride after my visits, I can do as I please. I am not lonely. I’m relieved. Life really is too short to keep postponing the inevitable. I have found that self-imposed guilt is the worst reason to make, or not make, a decision.

Beachfan

Kenzie,

If you are worried about not failing your DH by postponing/avoiding placement, then I am a living, breathing example of the epic fail, having placed DH last November.  He was easy to care for in the grand scheme of things; it took my kids to point out that he was “easy” because that’s all I did, 24/7, 365.  I thought I would keep him at home until the end, but after almost 12 years, I surrendered and, essentially, reclaimed my life (as he would wish, if he could).  

I am at the ‘shore; later I might walk to the beach and read a book or doze.  Last evening, I had dinner with the neighbors and we sat up late on the porch, listening to the ocean and finishing off a bottle of wine. The kids and grandkids might come down; an added pleasure.  I write not to boast, but to share the exhilarating feeling of freedom and contentment I now experience.  After 58 years of being joined at the hip to the only love I’ve ever known, I miss what we had and who he was desperately.  But “ he” is gone and I am here and I will make no apologies for having placed him. He is in a better place, as am I.  The monthly bill is not so welcome, but beyond that, I am at peace with my decision and my life.  I wish it were so easy for everyone this forum.  

Ed1937

Beachfan, nobody here thinks you're boasting, You're just telling it like it is, and that's something a lot of people need to hear.

Gig Harbor

Beach fan I am right there with you. I do feel guilty at times but my daughter tells me to stop! It is hard to know the right time but I was dreading waking up each day. In a marriage each spouse is equally important and as caregivers we forget that. It is tragic that our spouses were struck by dementia but we were not and it is OK for us to enjoy our remaining years. If the tables were turned my husband would have placed me a year ago LOL.

ImMaggieMae

How do the MC homes deal with bowel incontinence? If the PWD wanders around leaving poop in odd places or tracking it around or if they leave the bathrooms a mess, how do they prevent that?

dayn2nite2

ImMaggieMae wrote:

How do the MC homes deal with bowel incontinence? If the PWD wanders around leaving poop in odd places or tracking it around or if they leave the bathrooms a mess, how do they prevent that?

I don't know about MC, but in NH the PWD is toileted on a schedule and the resident actually gets pretty regular on the structured diet served.  People who are known to go in odd places in the beginning are watched to see if possibly they need to go and there is no asking "do you need to" they are just taken to the rest room.  Same if they have already pooped in their incontinence briefs, they are simply taken to the rest room.  The only time there might be a mess is if the person is ill and even then the aide helps the person get cleaned up (maybe another aide can help) and there is a cleaning person to clean and sanitize the bathroom.  It's not all-in-one like at home.

Also, there is no argument or bartering about whether a resident is going to wear briefs or not.  If they are incontinent, there is no "underwear theater" where the resident gets to say they're not wearing them.  The residents are not by themselves during the day unless they're sick - they are gotten up, dressed and then brought out to breakfast and then the common area for the majority of the day.  Then lunch, then some will get naps, then dinner and the staff start preparing the people who get sleepy early for bed.

Kenzie56

Thank you for all your posts and support. Our daughter is pushing me in this direction as well, as she sees me in distress.  My son pretends it is not happening...it is OK,  I understand it takes time to grasps the severity of this situation.  I guess I am at my lowest point because I retired in 2012 after 30 years of working while juggling raising the kids pretty much on my own while my DH was busy with his job (and drinking quite a bit). A couple months later, my father was diagnosed with lung cancer.  My mother was also diagnosed with breast and colon cancer.  I traveled back and forth from Virginia to Florida to help my siblings care for both of them.  My father passed in 2014, my mother in 2017.  My MIL came to live with us in 2015 with Lewy Body Dementia (DH's brother and sister have Alzheimer's and couldn't care for her). We placed MIL in a MCF in 2018 and she passed in 2020.  I started seeing signs in my husband in 2014. I feel once I retired in 2012 my life has been quite a challenge.  

After reading your supportive posts, I have been busy getting ready.  I ordered clothing name labels to be delivered to my neighbor's house. I am sneaking my neighbor DH golf shirts, underwear, pants, etc. so she can sew these labels on and put them in a suitcase for our transition.  I ordered a mattress/bedframe and the store owner said he will store it until I am ready for delivery. I need to buy a night stand and chest...so am getting ducks in a row to make this happen - maybe around September 1st.  I am scared that he will resist the placement and make a scene.  I wish he were a little more out of it so it would go smoother.  I plan to tell him I need surgery...I do need cataract surgery, so maybe he will buy it. Wish me luck...I need this after 10 years of caring for everyone else. I know I am strong enough...just needed a little confidence going forward. Thank you.

Beachfan

Best of luck, Kenzie.  You have gone above and beyond with caregiving for others.  It’s time to care for yourself.  You are correct; placement for my DH was drama free, no resistance.  He had progressed to the point of not knowing anyone, where he was or why he was there.  A depressing set of circumstances, but I can come and go with no reaction on his part.  It would break my heart if he were visibly unhappy, homesick and miserable.  This way, although sad, is better. I will be thinking of you.

ButterflyWings

Kenzie, you are an inspiration and yes my goodness, you have done more than enough dementia caregiving in the last decade even if you weren't now at a breaking point with unthinkable deposits all over the house. It is time for your DH to have a whole team looking after him, to do what you have been doing. And for you to reclaim your life. You will still be anchoring the team 

If you needed a sign that its time, well - you are getting the yuckiest ones around! You have seen (and cleaned) enough. It is time. Good for you with the steps you are taking to prepare for the move in advance. I too, hope it goes smoothly. 

That shifting line in the sand reminds me of when I learned a few years back the answer to "what do you do when someone keeps disregarding your boundaries?" And it was an eye-opener to hear that the boundaries we set are for us to keep, not for others--who certainly won't respect them if we don't. I can understand why CGs keep re-drawing the line though. Nothing about dementia is easy. It is good to see you respecting your own decision and good for your daughter for getting it. Hopefully your son will come around too.

MaryG123

Kenzie56 you are amazing!

Joydean

Kenzie, I admire you for all that you have done. Taking care of so many others, now it’s past time to take care of yourself. Very proud of your daughter for encouraging you. Sometimes it does seem like our kids are the ones that can get through to us better than anything else. Your son will come around too. Best of luck to you!

dayn2nite2

Don't worry about him being "with it" on placement, that actually will help - he will be able to participate in activities and I actually think the socialization (even if it's people-watching) will do wonders for him.  My mother, who was an introvert her whole life and still toileting herself when she was placed, was enlisted as a "helper" to the activities people and they'd say "come on, let's go get ready for bingo!" and off she'd go.  I know the thinking is that we want our LOs to be out of it when they go, but I feel like my mom had an easier time bonding with the staff because she would tell them the most fantastical things and they just enjoyed talking to her and seeing what kinds of answers she would give.

She had one main aide and I asked her why my mom did everything they asked with no pushback and the aide said it's always like that, they will always become very agitated when family tell them what to do and when the aides take over, it is just done.  

Get your cataract surgery, you need that.  Your neighbor is so sweet to do the name tags, but if you forget any, permanent marker works too!  Will it be hard?  Yes.  Don't discuss in advance, just take him and let the staff take over while you sign stuff and then slip out the door.  This is something you need to do for him and for you so you can continue to advocate and take care of him, just in a different way.  It's past time.

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Gig Harbor

Hi Kenzie,

My husband has been in memory care for a month and I had my third visit yesterday. I said and did what you are going to do. When I took him he asked how long he had to stay there and sounded angry. Fast forward to yesterday -  he was happy to see me and was sitting with three ladies in the dining area. He actually didn’t want to leave them. He needed a shave so I convinced him to head to his room so I could shave him. On the way we passed the sitting area and he had to stop and visit with them. They all smile and nod at each other and when someone says something (unintelligible) they all nod as though they understood exactly what was being said. We later went to the outside courtyard where other residents were sitting with visitors. He pointed out his friends. I realized at that moment that that it is his home and he is happy. I lived in the moment with him and did not bring up anything in the past or talk about our friends and what they were doing. When I left he immediately turned to head back to his friends. The staff said he has settled in well and never talks about leaving. I think that is because he remembers nothing of his past. For others who have better memories and recall the transition would not be this easy. I always tell him I have to leave to go to work because for him it is a legitimate reason to leave, I hope your husband transitions easily. It is hard but I think you realize the time is here. I just want you to know there is life after placement. It is bittersweet because the person you loved left a long time ago and the person with you now is just not the same person.