How to make the decision

Grandma Sandy

I would appreciate hearing from others how and when you decided it was time for your LO to go to a Memory Care Facility. Or if you are still considering it ..... how are you processing?

toolbeltexpert

Sandy welcome I have placed my dw last year. Not sure I answering what your asking,but it got to a point of being unable to keep dw safe. Eloping, she drove off and I had to call 911 but she returned on her own. After I took away any chance of driving she started walking away, which was another call to 911, the third time she asked the neighbors to call 911 which is what got her to a hospital er then to a 7 week geripsych stay, then to a nursing home.

They say you'll know when it's time. It sounds like it may be approaching for you since your asking.

It has been the most difficult thing I have done bar none. And lots of emotions to process, and I still am 11 months later. Others will be along and share some much father along and some who have just place. It is always different for everyone.

Stewart

Ed1937

My reason was probably a little different from most. My wife could not make me understand what she was asking/telling me, much of the time. "Three to eleven" took the place of any word she couldn't find. So she might ask me to take her to "three to eleven". She knew what she wanted to say, but that's what came out of her mouth. If I told her I didn't know what she wanted, she would call me a liar. Then many times she would leave, going to her parent's house (they've been gone for years). She would go out the door, and refuse to come back in because she was leaving. I couldn't leave her out there because she wouldn't find her way home if she was more than a few houses away from ours. The only way I could get her in was to physically force her, which I didn't want to do, or call police for help. Three times I called them. The last time, our adult son was also trying to talk her into coming in when the police showed up. He became over emotional, and one of the police consoled him, while the other talked my wife into coming into the house. She went with him, but would have nothing to do with me. This happened pretty frequently, and I decided it was not the way for her, me, or our son to live.

Grandma Sandy

Thank you for your comments Toolbelt and Ed. Also, did they adapt well to their new surroundings once the move was made?

Grandma Sandy

Ed, yes I have heard the comment, "you'll know when its time". But I feel guilty that I am not doing all I can or I am doing things wrong or I am abandoning him, etc. etc. It is so hard to make such a decision for how someone else has to live their life. The recent corner I have turned is due to new behaviors that have caused me to no longer feel safe.

terei

You are not doing something TO him, you are doing something FOR him. One person cannot be a 24/7 caretaker without compromising their own mental + physical health. What happens to him when the stress finally causes YOU a crisis.

Better to have care in a facility where you can visit at will, but yet have your own time to decompress + have a more well rounded life. JMO

Ed1937

Sandy, my wife was only on there for 20 days when she passed away. I didn't even visit her because we thought it best to wait 3 or 4 weeks before trying. I had plans to visit her the day after she passed away. Our kids were able to visit with no triggers, and someone was up there with her every day.

Dio

Reasons that led to placement, pretty much on a daily basis:

Incontinence started. At first, he wouldn't put on the incontinence briefs. Then it was denying it leaked and had soiled his pants, that it was dry, that it did not smell (OMG, my house was reeking with urine stench!). Then he started panicking when I took his soiled pants to wash, hanging onto his pants for dear life. I literally had to peel his fingers from its grip. It was such a struggle to keep him sanitized and clean.

He raged and screamed at me like starting WW3 whenever it was time to shower, shave, brush teeth, wash up, change clothes/depends; these mundane activities became such a struggle. Berated me on EVERYTHING I did as if I've committed a cardinal sin--doing laundry, cooking, heating up food, vacuuming, making morning coffee...

Everything I did was chastised or accompanied by endless commentaries: "You didn't have to turn on/off the lights ... You're on the computer again?!! ... You don't need to put on face cream--why do you have to do it over and over? ... What, you're back sitting in your chair?! ... You're pee'ing/poo'ing again?!! ... That's not how you make coffee; you're going to break the coffee pot! ... You spent all that time in the kitchen for just some eggs and toast?!! ... You're using up every single pot and pan and utensil we have!!! ... You're using too much dish soap/toilet paper/paper towel!! ... Why are you doing this to me?!"

It was nonstop "where are the keys, my wallet, my glassess? I have nothing in my pocket. I have no more clothes--what have you done with all my clothes (in spite of showing him the full walk-in closet)? I have nothing left!" This eventually led to him not wanting to leave the house at all, that we couldn't get back into the house (even though he's holding the house key). He wouldn't let me go out either. Once, I had to ask his friend to bring us milk when we ran out. Each time, I literally had to "escape" to conduct business outside the house, like dropping off garbage or going to the mailbox, or buying groceries.

While I fully recognized that it wasn't his fault, that the disease was causing his erratic behaviors, I was burned out physically and emotionally. Finally, the straw that broke my back, he started grabbing my shoulders and shaking me like a leaf whenever he didn't like something, and literally got into my face to intimidate me. I started to fear that he could hurt me.

I started the research as soon as incontinence reared its ugly head because I knew it would take a lot of time to find a suitable memory care facility--thanks to the wise advise from folks in this forum! He still had moments of lucidity then, so he was fine when he saw me googling. He would ask if I was looking for his long term care, which I explained that I wanted to get his long term care secured, to insure he'd be well taken care of if anything should happen to me. He was okay with that, at the time. After touring a dozen places, I was put on two waitlists. An availability became available on a most challenging day--it couldn't have come at a better time. It was my salvation!

It's been almost 2 months since DH is in memory care. I haven't visited, yet. He is still acclimating. He has told staff that I had visited (not) and that I said it was OK for him to go home (not). Another time, he told staff he didn't belong there and shouldn't have a room...(heavy sigh!)...I don't know how long the next phase will take, but I'll be sure to post updates.

PookieBlue

When I read posts about when does one know it is time to place a LO, I can’t imagine having to deal with poop and pee in non toilet areas. Especially if it is too frequent. I know I would start to spew blood out of my ears and eyes as my head explodes. Even though long ago I worked as an LPN in a nursing home during my training, I know I will not tolerate indiscriminate incontinence all over my house. I’m pretty sure I will not feel regret placing if that is the circumstances I have to live in. I think it may come down to if I am ready to spend all of my hard earned retirement on long term care. I don’t know.

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toolbeltexpert

Sandy my wife seems OK most of the time, but not content, she asks alot if I am gonna take her home today I sometimes say yes which she just forgets or I say that the doctor need to check something, or he is thecone who has to release her all fiblets. I have not missed a day since she came out of the geripsych. I think it's more for me than her though as I deal with the same emotions we all feel, we all do what's best in our situation for our well being . But I am gonna work up to missing a day this year or maybe a week. I need to visit with family.

Denise1847

Thank you Victoria. This was a very helpful video.

Jeanne C.

I'm avidly following this thread. My sister in law has been pushing me to get a live in aide. She likes to point out that her family has a "tradition" of keeping family at home and really lays on the guilt. However, she lives in Massachusetts (we're in Delaware) and hasn't seen her brother in 5 or 6 years. I'm hoping to keep him at home for as long as I can, but I'm trying to be realistic about my limitations and what would be best for him. My heart goes out to you, @Grandma Sandy. This is a hard decision. Please remember that you need to take care of yourself as well as your DH.

T57

I'm new here but this topic is exactly where I am. My dh got sepsis in March 2021, oxygen levels dropped, had to be intubated for over a week, recovered but lost the majority of his memory as a result. For two years the neurologist still won't diagnose him officially but says dementia is like a fever.. it only indicates something is not right and all we can do is wait for what happens next. Good grief! I go from day to day wondering if he's really got dementia or is he just milking the situation. He does show classic signs of refusals ie showers, taking meds, refusing to just get up and move, etc. But then other days he seems normal. We also own a small business which is left up to me to handle now as well as be caregiver. It's a lot on me. I'm like Pookie Blue... it's either keep him here longer or start paying someone else. I feel so alone with this decision.

DorisEmma

I just placed DH 6 days ago. I have visited every day but am thinking of skipping tomorrow. I will be back the next day since I want to attend a talk at the facility. I had the usual mixed feelings. Our daughter and I have been looking at places for over a year, getting ready for the day that placement would happen. He was even refused placement at one place that had Assisted Living along with Memory Care because he was unwilling to even visit with the staff via Zoom. It was then that we decided a place that only specialized in memory care would be best. So far we are pleased with the place and the staff although my husband has not adjusted and probably will take a long time to do so. Why did I decide to place? It was difficult living with his refusals, negativism and occasional incontinence. I did not bother to try to get him to brush his teeth, change clothes at night. I did request a weekly shower and that was accepted by him at times and at times with verbal objection as I showered him. He never accepted having a care giver in the home. Fortunately, I had a person who understood his behavior and I was able to get out occasionally. But I was stuck at home in the evenings and weekends, always felt tense as I worked to keep the calm with many fiblets. Yet, now that he is in a facility, I wonder, should I have waited longer? But frequently I have heard from others that they wish they had done it earlier and there is no right or wrong choice. I need to work at developing my own life after years of adjusting to his needs.

Elshack

Grandma Sandy,

My DH has been in memory care for 9 1/2 months. He had brain surgery 4 and 1/2 yrs ago and I took care of him until last August when he left the apartment and was trying to get into our locked car. He fell and broke his ankle. REhab in the hospital and then directly to memory care which is in the bldg next to our independent living apartment. He had incontinence issues due to Crohn's disease. Each person is different but he has adjusted well to memory care. I see him almost every day and he knows who I am. He soon will be 93 yrs old and is on hospice and has his food pureed due to swallowing issues.

I think you will know in your heart when it is time. If you can afford it, I would definitely look into it. I think if I had kept my DH at home I would have been directly affected healthwise. My DH is a kind soul who has never said an angry word to me and yet it was very difficult for me to continue to take care of him. His broken ankle was a blessing in disguise as prior to that I hadn't put the wheels in motion for memory care,. Since he wandered away from our apartment that one time, he was not a candidate for assisted living but had to go to memory care. Luckily this memory care has a great staff and he seems content there.

Joe C.

Sandy, Welcome but sorry you needed to seek out our community. I placed my wife 18 months ago do to safety concerns and the fact that I was reaching the point of caregiver burnout. She was wandering, incontinent, trying to eat things various objects that would fit in her mouth like bottle caps. For DW placement turned out to be the best thing for her as she is very happy at the MC. She loves having people around constantly whether staff, visitors or the other residents. She enjoys the activities especially music because she loves to get up and dance around the activities room. She has never asked about home but honestly she no longer recognized our home when she was here.

If your thinking about placement start touring facilities now, there is a lot too learn when choosing a facility.

M1

Hi grandma Sandy. I had to place my partner 13 months ago because of threats of violence when she didn't always recognize me. It wasn't really a choice at that point. We switched facilities a month ago because the first was not a good fit. but still after 13 months she is wanting to leave virtually every day, will not let staff help her with showering or clean her room, thinks everyone else there is worse off than she is (and many are), does not want to make any friends. There's not a perfect time or a perfect solution. Even in dementia I think extroverts fair better in a group setting than introverts.

Davegrant

Thanks for your question and Thanks for all the responses. This helped me put this question in perspective.

JoseyWales

I waited way too long to place my DH. He didn't always recognize me, and would run away or demand I leave. He threatened to call the police (he no longer knew how to use a phone) and threatened to hurt me. I was hiding from him in my car, my shed, upstairs... you name it. He was also not sleeping at night for more than 2 or 3 hours at a time.

Don't wait until you get to the point of it being an emergency.

Jo C.

It was the most difficult decision I had to make. My Loved One was really off the rails in behavior over the 24 hour continuum. While antipsychotic meds made a definite difference, there were triggers at home (not from people, but in the environment I think), that caused much upheaval. What my LO was able to do prior to dementia was no longer able to be done in the house and I think that was part of the problem issue. The ability to hire someone to come in and help as I had to work, was severely hampered as the level of care was so high and most agencies refused to come in due to the ongoing behavior. Aides would just not stay.

It was a matter of being a dreadful situation for all involved including my LO. Placement was made. I was sure to have all clothing and toiletries put into place before admission. I also had a nice bedspread and some photos placed and I was permitted to have a favorite chair put into the room.

I was astonished as I expected a dreadful reaction, but instead my LO did not create a fuss and actually did well. The extra socialization, the activities to attend and watch or even join in, as well as good routine and structure and especially without the triggers that existed at home were key in such an acceptance I think. It also helped that the facility care plan had assigned the same staff member to bring my LO to meals in the dining room as well as to activities for the first two weeks . It made a bridge in getting settled.

What I discovered after a lot of tears and waking up at night, was that I was able to visit and be well rested and once again being a loving person instead of an exhausted, tense person under uber stress.

Also; once you make the move, there will be a period of adaptation not only for your LO, but also for yourself. That has to be worked through; it is part of the process. If at any time, you change your mind, the placement is reversible to going back to home again; nothing is locked in. The expense of it all is a consideration that keeps many caregivers persisting in care in the home setting, that is a concern that one must assess and deal with. Let us know how you are, what you decide and how it is going for you, we truly do care.

J.

ghphotog

I think I'll have to place my DW sooner than later. She's ready for MC now and has been but she used to plead with me everyday not to leave her and I didn't. She made me promise I wouldn't send her away.

Lately I've become a trigger for her as she is always demanding I "GET OUT of the house NOW! or she's calling the police. That can go on all day. She still knows who I am but nothing else about me. I'm mostly just the "good person" that helps her. On my bad days when I've had enough and snap at her then I become the other "ugly and mean" person that won't take her home to her mom and dads so she can see her "babies" and so she want's me to get my ugly face our of here.

My sanity is waning and after countless second winds I think I'm reaching the last ones available. I need to place her now but I just can't get myself to start writing 5000.00 checks every month. That's a huge deal and will drain much of our life savings in a mater of a few years or less. Also once I start taking that much out of our retirement accounts I still have to pay tax on every 5 or 6k withdrawal. That also will increase out tax bracket and eat up even more of our savings. . . so I'm reluctant and I also love her and do not want her to feel I abandoned her.

I still think I'm still a little ways out from MC but who knows. That would break her heart to see me leaving. She would be crying and sobbing and that always gets me. My cue I guess is once I'm always the bad guy and she no longer knows about the other "good" guy then. . .

Vitruvius

ghphotog

My CPA assures me that memory care for someone with dementia can be a tax deduction within the medical expenses category that kicks in once it surpasses 7.5% of your AGI. I am however not a tax expert so you need to do your own due diligence to confirm the specifics of your case. There are rules on just what is deductible and what isn't. I believe Crushed has written about this before.

Whyzit

I’m meeting with my lawyer tomorrow to file for Medicaid so DH can be placed. He was diagnosed with MCI in 2010 so this has been a long journey. We have been through the angry part and now he is quite pleasant but the negatives are urinary incontinence, reluctance to bathe, wipe his bottom and brush his teeth along with apathy, memory loss, etc. etc. etc. He gets up at night and eats whatever he wants and I’m concerned that he may leave our unit.

He has caused our toilet to overflow 5 times resulting in damage to our downstairs neighbors bathroom ceiling needing to be replaced which we are responsible for.

Everything is going to get worse over time and at 82 I don’t have the strength and ability to keep on keeping on. He deserves a better atmosphere than what I can provide and as Victoria2020 generously showed in the video …… when did I become less important than he is?

Best wishes in your decision making!

Grandma Sandy

Each and every comment has been so VERY, VERY helpful. I cannot thank you enough for sharing. Some of you have described EXACTLY what has been happening in my world with my DH's behaviors. Sometimes I guess we think ours is a unique and dire experience, but clearly we are not alone. My journey has not been as long a some of yours. Thank goodness. I look forward to any other comments that may be added. I hope it has also been helpful to others here.

SusanF629

> @"Grandma Sandy" said:
> I would appreciate hearing from others how and when you decided it was time for your LO to go to a Memory Care Facility. Or if you are still considering it ..... how are you processing?

I just had to make that decision a week ago and it was horrible. My LO had been hospitalized for the second time in two weeks for behaviors (he went after me and my daughter violently). That was shocking. So, after being hospitalized for two weeks and getting a diagnoses of D, it was recommended he go to Long Term Care. We are NOT that old so, this has been horrible especially since I was told he had another disorder and not D. I would say that the lack of interest in life, the behaviors and the fact that my LO no longer has good judgment helped me make the decision.

Grandma Sandy

Susan F629 ..... you are very closely describing my situation. My DH had already been diagnosed with D, but the aggressive behaviors caused him to be hospitalized. And yes, it has been horrible. New meds have helped him, but everyone close to me says Memory Care is the best option. It is just so very hard to do. Especially since he seems improved. But many other behaviors say it is time. Your post has been helpful for me not to feel so alone in this because it sounds very close to my situation. Thanks for sharing