how did you know when your loved one was ready for placement in memory care facility?

Wishididntneedtobehe

Hello,

I was wondering- for those who have placed their loved ones in a memory care facility- how did you know it was time? as far as when you knew you were not able to care for them at home? or they needed more than you could provide?

 What kind of behaviors and issues did your loved one have at home- that led you to decide it was time?

And then how did that placement go- for you and for your loved one? Initially and with more time passing?

I am just trying to get an idea of what it looks like in other people's situation- those who have already gone through it?

Thanks in advance for your input

Marta

Wish:  you have already identified the reason for placement:  when the family has exhausted all abilities to care for LO at home. Trust your gut and go for it. You know best when it is time. 

Thinking of you and wishing you the best. 

Rick4407

Hello Wish,  My DW is still at home.  Six years since diagnosis and in early stage 7.  I've been a very consistent reader of the forum for a long time.

My own limit and one that I've seen many many times before is aggressive behaviors.  Second is probably wandering, when the LO is constantly trying to wander and the care giver cannot keep them safe.  With some people there are specific red lines, bowel incontinence for example.

As Marta was saying, whatever the specific it's the care givers inability to cope with a specific behavior or an accumulation of factors.  It sometimes depends on external factors as well.  Shared responsibility, respite time, the caregivers own health, family finances, the time the caregiver can devote to the LO, etc.  

It's a difficult decision and each person comes to it via a different path.  Rick

Dunc1129

It is time for placement when you, the caregiver, has become emotionally, physically and spiritually bankrupt.

M1

As Rick said, aggressive behavior was the trigger here.  Simultaneous with other uncontrollable behaviors, including overfeeding the animals, not recognizing me, and starting to wander at night (to feed the animals).

harshedbuzz

I would given my blessing to placement as soon as dad was diagnosed when he was well into the middle stages. The phase where he still had some orientation to what was going on was challenging- he was mean and suspicious and difficult to redirect. 

Dad was not an easy individual prior to dementia. With the loss of social filter and empathy, my mom was on the receiving end of aggression and accusations even with robust cocktail of medication on board.

Mom was 80 and had a lot of health issues including a compromised immune system from medication. Not only did I not want her last days to be spent dealing with caring for an unpleasant PWD, but I also had real concerns about her cleaning up after fecal incontinence. This was around this time that his sleep pattern became very fractured which meant mom was getting enough sleep. I started pushing harder for placement at this point.

I had a CTJ when I found out he was expressing homicidal ideation. Dad had a sense that he was dying and had decided that mom should die at the same time as they "did everything together". We placed him within days after I told mom that should he succeed or she died of natural causes, I would put him in the very first place that had a bed (I had a Plan B and a SNF that would accept him same-day if needed) and that he would be in it before sundown. I told her if she wanted to pick his MCF, she needed to act now. 

HB

GothicGremlin

My experience is much the same as the others - it was a combination of things. My sister wasn't able to navigate the house anymore, like, not being able to find the bathroom even when it was right in front of her. She'd often stand still in a room because she couldn't figure out what to do. It was really stressful for her. And then there was the incontinence.

She's been in memory care for a little more than a year now. At first there were a few meltdowns mostly because she felt like memory care was a punishment and she was being punished. She acclimated though, and now she's doing pretty well there.  She's quite rare in that she's actually told me that she thinks she should have moved there sooner.

toolbeltexpert

I guess my experience was safty first, I live in the county, and disappearing into the woods or some how getting into a vehicle when I wasn't  looking. That happened but lucky for me she found her way home. I worried if something happened to me dw would be unable to get help. She didn't recognize me all the time and I didn't belong here, this was her house. I had the same problem as m1 with feeding the cats,a daily struggle to work thru especially at sundown time.

It was the hardest thing I ever placing my dw, and daily visiting is also hard. I know if I didn't visit it would be worse. Now the first holidays are upon us and not having my lifelong companion at my side enjoying a meal, well that's an everyday thing eating alone missing her, the quiet silence at home.

I am working thru this one day at a time, I am greatful for all the beauty that I get to see on my 30 mile drive to visit and love seeing the beautiful sunrises, I go over a lake every day and the fog lifts on the mountainside where the sun is shining creating a fiery cloud kinda olt testament stuff. I often stop and thank God.

That's parts of why I placed my lifelong partner and how it goes after that happened. Day by Day. 

Klako

I am struggling with this too. The doctor just told me that my dad should not be alone. He is one bad decision or fall away from something bad.

We have found a place for him and plan to go Friday for next steps. Even though I know it is what needs to be I just have such reservation due to my dad not really knowing he has dementia and not understanding. 

Although I know from all of you here this will be better, it is such a hard and guilt-filled decision.

SeaGal

I put my husband in memory care after 4 years of taking care of him at home.  The tipping point for me was when he couldn't take care of his depends and pads himself and was up 1-2 times a night needing help to go to the bathroom.  He also couldn't be left alone at that point and needed help with getting dressed and showering and prompting for just about everything.  He shadowed me all the time, so I never had a minute to myself.  I tried home health aides for a few months, but I wasn't getting any sleep and they needed supervision, so it really wasn't a big enough help.  I was totally exhausted, and I knew it was only going to get worse.  It did help that we have long term care insurance.

Hopefully, you'll know when you are totally exhausted and can't have a life of your own.  However, as I say this, a social worker told me that 60% of caregivers don't know when they've had enough and wind up getting sick or dying themselves.

Since your are asking the question, start looking around now for placement options.  Some places might have waiting lists.  The other consideration is you don't want to wait until there's a crisis, and you have to start scrambling.  Consultation with an elder law attorney for financial considerations will be important, too.

Best of luck with this very difficult decision.

Ed1937

Everyone has their own limits, whatever they are. What are limits for one person might not be the same for others. We are all individuals.

The reason my wife went into MC was a little complicated. She was incontinent, but that was not the reason for me. I could handle that. She had a hard time finding words, and the thing that took the place of the missing word was "three to eleven". So if she asked me to take her to three to eleven, I had no idea what she wanted. She knew what three to eleven meant, but I did not. She knew what she was saying, but that was not what came out of her mouth, if that makes sense. She would get upset with me when I would tell her I didn't know what she wanted, because in her mind I knew what she wanted. She would get so upset with me that she would leave. I couldn't let her get far because she wouldn't find her way home. If I tried to talk her into coming home, she wouldn't do it. My only choice was to physically force her to come home, or call the police for help. Three times I called them, and they were great. 

I built a small shed on our back deck, and wasps built a nest between the rafters. She would be upset, and try to leave, but she wanted to hold onto the roof of the shed, right where the wasps were. I'd tell her not to do that, but she couldn't remember for more than a few seconds, so that was problematic too. 

The combination of the two made my decision to put her in MC. 

*Ollie*

We are in the space where we are figuring out AL or MC for my mom who has been living with us for 1.5 years.   She is mid-stage dementia and occasionally exhibits some later stage signs like not remembering her other daughter's/my sister's name (she referred to her as "someone we both know"). 

The move is because of the amount of stress and exhaustion we feel regularly.  Though my mom is fairly physically healthy, her care is reaching a level that supersedes what we can handle. 

We work full-time, have two college age children who we rarely see because coming here centers around care for my mom, friends we rarely see and are still relatively young.   Selfishly we want our lives back.  Caring for my mom has taken over our world.

As others have written, they are still caring for their loved ones way beyond this point and that is what is right for them.   Working full-time and taking care of a person with dementia is beyond what I can do!  

Elshack

I had taken care of my DH for almost 4 yrs. Last July he left the apartment and other residents found him trying to get into our car and he was trying to frantically open the car doors that were of course locked. He broke his ankle in 2 places and was hospitalized and had therapy. He went from the hospital and rehab directly to memory care which is in the bldg right next to our apartment building.

That was a blessing in disguise because prior to that he was having major bathroom problems with explosive diarrhea caused by his Crohn's disease. He had become increasingly more difficult for me to take care of him because of this. He has been in MC for 6 mo. I think if I had continued to try to take care of him I would end up getting very ill. I can see him every day if I want and I know they are taking care of him. It is expensive but I know I will have enough money for maybe 2 yrs. He is 92 1/2 and I pray he can pass peacefully in his sleep. He had brain surgery 4 yrs ago and since he has been in MC has had Covid and an intestinal bug. The MC has 16 rooms and he now is on a pureed food diet. He has fallen a few times and he is now on hospice. When I see him he is always clean and he still knows me. 

Suzzin

I find it discouraging to read things like "when you are totally exhausted" or "emotionally, physically, and spiritually bankrupt". I would hope that we can all have compassion for ourselves and others, and not set the bar so high. 

For us, it was time to move my parents out of their home and in to AL when things had snowballed so that it no longer made sense. They needed 24 hour sitters just in case something happened (a fall, an argument, putting a donut in the microwave for 5 minutes until it caught on fire, couldn't work the tv, getting out of bed at night and peeing on the floor instead of in the bathroom, making sure they had food, keeping an eye on dad when he went for a walk by the lagoons with the alligators...), but they didn't need or want the constant presence of a rotating series of strangers sitting on the couch looking at them. They couldn't cook or shop for themselves, couldn't drive, they couldn't clean the house, they were isolated. House maintenance was becoming an issue. I was spending 3-4 hours a day visiting them, plus cooking for them, managing doctors appointments, covering when a carer didn't show up, covering when my dad got angry and kicked the carers out, etc. Yes, I was tired and stressed, but I didn't want to push myself to a breakdown.

We moved them to an AL place close to me, and that has been a blessing. They have people watching out for them, they socialize at meals, there are nurses and carers who can check in on them without spending the day sitting on their couch.

DotBern

Hello, 

I can share some insight as I recently placed my mom (83 yr. old) in a memory care/assisted living facility about a month ago. She had been living in her own home, living with and taking care of her younger sister who has dementia for the past year. I noticed mom's memory slipping about 6 months after my aunt moved in. My mom progressed quickly. She was diagnosed with moderate vascular dementia and Alzheimers in June. I brought caregivers into the home and set up a schedule where I would stay over one night per week, shop, cook and caregivers were there twice per day to give medications and serve meals. My aunt was progressing and mom no longer was able to see my aunt's dementia as she was in it herself. Mom's progression was seriously noticeable. She was unwilling or unable to know she had issues and felt the doctors were all wrong and "flakes". I moved into her home full time the last 7 weeks of her being at home and realized just how much she had declined. She no longer felt the house was her permanent house. It was only temporary. There were days she thought it was my house. She wanted to go back to her "other" house. It was maddening the things I witnessed. Mom was still able to independently dress and shower. No longer could cook or fix a meal. Had been unable to remember to take her medications on time or regularly for months. This is what prompted having caregivers when I couldn't be there to make sure meds were given regularly. When she kept insisting she was going home, I told her that I was looking to downsize her home and find her a suitable place. All the while, I was touring memory care facilities and was lucky enough to find a good fit for her. My cousin and I had to put my aunt (who was much further progressed in her dementia) into a nursing home. My mom was financially able to pay privately to an assisted living facility. I took her to see her neurologist in December and he felt the best place was a memory care facility. She was angry with me off and on over the course of the weeks I lived with her. There was no reasoning with her and everything she felt or said, there was no correcting her or reasoning with her. I noticed her slipping into a depression. She was no longer able to drive, this stopped in May. She felt trapped in her own house. Winter weather was no longer allowing her to enjoy sitting on the deck. She was beginning to sit in front of the TV for hours which drove my aunt crazy. She did not want to go out or go anywhere. She had always been an active person. I spent a week getting her new studio apt. ready for her arrival. I brought her there (she wasn't happy about being separated from her sister). We used many "fiblets" to get her to go. My husband and I were moving back into our home and her sister was going to live with her son and she would be alone at the house and we didn't feel it was safe for her to live alone. She was mad as hell at me. Once she arrived at the facility, she was lavished with attention from the staff to a point where she was so surprised and didn't want to show her "ugly" side with anyone but me. She agreed to stay for a few days in the beginning but would not speak with me. She said many hurtful things to me and I had to deal with it. Not easy!! I left her for 3 days per the staff's recommendation. They called each evening to tell me how lovely my mom was and how well she was doing. I took her to a doctor's appt after 3 days and she refused to speak to me during the entire car ride and visit. I just kept talking and acting like things were normal. She would answer yes or no and that was the extent of her conversing with me. She was still angry. After a week, things suddenly changed. She was making new friends. She began calling me on the phone and telling me how she was "out" all day and enjoying the daily activities and decided she would stay for the winter months but would go home in the summer. So here we are 1 month into her stay and she is happy, engaged, enjoys the other residents and is the "leader" in the group. The staff enjoys her pleasant nature. Wow! I couldn't be happier for her and for me. It gives me a peace of mind to know she is happy and engaged. So I think you'll know when it's time. I hope my long winded story helped. Wishing you all the best on this challenging journey. 

BassetHoundAnn

My mom's move to memory care was long overdue. Because of covid I kept her in her quasi-assisted living apartment. As soon as things started opening up, and visits of relatives were once again permitted in memory care facilities, I moved her. What told me she needed memory care was that she was no longer capable of handling the basics of life, like dressing herself, washing, getting to meals, and increasingly going to the bathroom on her own. She needed 24-hour supervision, with someone to entertain her and watch her at all times to prevent her from getting into trouble or wandering off, and for numerous reasons I couldn't provide her with that level of care.