Help

TyZay

Hello,

I am so torn about making the decision to place LO in memory care. I am his only caregiver, 27/7. Just when I have reached my limitations, the last 2 weeks have been more manageable.

How do you know when it is truly time for memory care?

GG06

Hi TyZay,

I can only imagine the mental gymnastics this decision causes. My husband is only in the early stage of dementia, and I already think about the anxiety this situation will bring. Hopefully members with this experience will help you make the decision that's best for you and your LO. Virtual hug to you.

ghphotog

Same here. Still trying to figure that out myself. I know my DW is ready one day then the next day is a little more manageable. I guess we will know when everyday is unmanageable.

Ed1937

I'm sorry this is so difficult. When this happens, it really makes it hard, hard. I think if you have reached your limits, you have to think about the reasons you got there, because it's going to happen again. I know that doesn't make it any easier, but you have to be realistic about your own health.

toolbeltexpert

Well I have gone down this path and it isn't an easy one. It is lots of emotions, just because they are placed doesn't mean no more troubles. Of course the financial aspect is usually the hindrance for a lot. Medicaid has its place and its places. I went personal pay, not the cheapest place but, good care. I knew I had reached my limit and others around me could tell as well. Safety is number 1 reason, health concerns for the both of us was number 2.

Many say it is best if it's early, placement for me came because of crisis. Driving off not, recognizing me, to name just a few things.

For you it maybe a different crisis that occurs, maybe a fall, I hope you can come to grips with this decision it isn't gonna be an easy one. Only you will know really, family support can help ease this. I talked to sil for hours and hours and she kept thanking me and assuring me I did the right thing.

Keep a list of the reasons why if you make the decision to place, it will be a help when you question if you did the right thing.

I have videos that I never want to watch again ever, but if I ever think about bringing dw home I'll watch them and that will secure me in keeping her in mc.

So sorry you have been to that limit I know how frustrating this disease is for the caregiver.

Stewart

loveskitties

Moving a LO to Memory Care is not something you are doing "to them" but "for them" for their own safety and well being. Your own well being is definitely to be counted in the decision...if they need 24/7 supervision you can't accomplish that alone.

The move to MC changes your role from being the lone caregiver to being their advocate to insure they are best taken care of.

At the very least you should be checking out facilities at your preferred location to determine where you would like placement...they are not all equal in pricing, Medicaid financial assistance, services. Most will have a waiting list. If you wait for a crisis to occur before making a decision your choices may be very limited.

Beachfan

Hi TyZay,

Everyone will have a different spin on this; here’s mine. DH was diagnosed MCI in May, 2010. From that day forward, I was his primary caregiver; by 2013-2014, it became 24/7. Around 2019, I began researching MCF’s exhaustively, “just in case”. In October, 2021 (11+ years in), I decided to try a 30-day respite at a facility that checked all the boxes. I was curious to see how the other half lived- -DH under someone else’s care, me with some freedom. (By this time, DH no longer knew family members, home, anyone or anything.). On the day we finalized the respite plans, standing in the parking lot outside the MCF, our oldest son announced, “Mom, when we drop pop off for respite on November 12, we are not bringing him home after 30 days.” I was flabbergasted. I thought DH was easy to care for; I would keep him at home until the end. I didn’t realize I was running on empty; he was “easy” because I made it look easy. I did nothing else- - missed grandkids’ activities, cut family get togethers short, took DH everywhere, essentially I had no life.

Looking back, we did not bring DH home; he remained at the MCF for 17 months until he passed in April. In retrospect, I am thankful that someone else validated the simmering doubts I was secretly harboring in my heart. DH was well cared for, well loved and content all the while he resided at the MCF and I was able to get a part of my life back. My advice would be to start researching well in advance, follow your heart but don’t ignore your head. It’s a horrible place to be; I am thankful I am past it. Best of luck, however you proceed.

Ed1937

One thing I should have mentioned is that if other people around you, family members or friends, tell you that it's time, they are probably right. Looking in from the outside, they can see things that you are blind to. But the final decision has to be yours alone.

TyZay

Thank you all for your advice and wisdom. Ed, yes, family and friends are saying it’s time and concerned how this could affect my health in the near future. I hate that this has to be my decision. Married for 41 years. Interestingly, a friend of mine asked me if I thought he would be able to take care of me if I was the one going through this. I said I wasn’t sure, so I asked him. He did not hesitate at all, and said, “no, I’d put you in a nursing home”.

I was not hurt by that, it was his honest feeling. And it kind of gave me a tiny, tiny bit of permission.

[Deleted User]

The user and all related content has been deleted.

TyZay

So, true. I need to keep reminding myself of this, but the guilt is overwhelming.

Elshack

I agree that you should look into Memory Care facilities now. I was lucky in a way that DH broke his ankle and because he left the apartment ( escaped ) and was trying to get into the car and fell down, after hospitalization and rehab he had to go to memory care. I was his caretaker 24/ 7 prior to that for close to 5 yrs. You are not being selfish realizing that your health is of great importance. I agree if others are saying it is time to place him it is time. My DH has been in MC for 10 months.

My DH who just celebrated his 93rd birthday is being taken of and I visit him every day. If you can afford memory care I would definitely go that route. Each caretaker's experience is different but for your own good and especially his, check out MC facilities.Sending you supportive ((( hugs ))).

M1

Hi Tizay. My partner and i live(d) on a beautiful farm she had purchased as her retirement property in the late 90's and had been our joint project since that time. She started showing symptoms about 2014 (age 72), and by 2016 I sold my house in town and moved out to live with her on the farm full time. Things progressed slowly, but by 2021 we were deep into it, and she was no longer capable of cooking, shopping, driving (a huge and continuing battle), managing finances, or maintaining the property. She would give away thousands of dollars to animal charities, overfed all of the animals constantly, and once I came home to find her giving computer access to a phone scammer. I started looking for home help and researching MC facilities, but she was very resistant to bringing anyone in to help (has anosognosia and thought she was fine), and home help proved impossible to find in our rural area (still is, despite the easing of the pandemic). As I was researching, things hit a crisis point when she started not recognizing me and threatened to come after me with a knife if I wouldn't let her drive. That landed her in the hospital for three weeks (which was a medical disaster, but that's another story) and she has been in MC ever since. My first choice facility coukln't/wouldn't take her at that time, so I had to scramble to find other placement, which did not prove to be a very good choice over the year that she was there. That was not an easy way to accomplish any of it, and I wish there could have been a different outcome; she has not been content in MC, and cries to come home, although she no longer remembers the farm, and is starting not to know me any more. My visiting does not bring her contentment but seems to be a trigger for unhappiness about 50% of the time. She thinks her parents are still alive and wants to move back to Texas, her childhood home. I moved her from one facility to another (my first choice) about six weeks ago, and things are somewhat better--she is a bit more content with larger spaces and more outdoor room, and staff communication is much better with me.

Long way of saying, there are many experiences that lead people to have to put their spouses in MC, and many reactions to the MC setting that depend in part on their underlying personalities (my partner was always a loner, hates asking for help, and hates a group setting for most things). I hope hearing some of our stories will help you feel somewhat better about it. But I also was in the position of 24/7 care with no backup--no family or friends who could step in in any way. I have some life back, but only some--it's been a very difficult road, I still feel overwhelmed by now managing this property by myself (complicated reasons i can't sell it until her death), still trying to work part time and visit with her in MC when I can and when her temperament allows.

Colt99

 I can confirm that this is a horribly stressful experience – planning and then execution. I began the MC research to have plan B in place. I anticipated the trigger to be either some form of emergency sending DW to emergency followed by MC, or something happening to me taking me out of 24/7 caregiver role. In the end neither trigger scenario actually occurred. It was the increasing burden of 24/7 care requirements and personal health concerns. After a year of research, I decided to avoid the plan B emergency move and make a more controlled transition. After two months, DW has accepted MC as her home but still recognizes me and our relationship – we should always be together. Our most stressful time is when I leave, not arrive.

Obviously no two cases are identical. Good luck on your journey.

????

I am in the same boat. The last few weeks have not been very good, but the last few days have been okay. I started checking our MC places to be ready when the right time happens. Her Nuerologist told me that I should get on a waiting list for when the time is right. It is a very hard decision. I am preparing for the worst, hoping for the best.

RickM

Lots of great comments here. I too have had many of the same experiences and emotions. Like Colt99, I avoided the crisis and moved my DW into MC after a respite stay went very well. DW is understanding and accepting for the most part. But I sometimes get that sad and forlorn look when I leave. That’s hard on the heart.

Dio

I think most posts have covered it. If you haven't kept a log/journal of your LO's "unbearable" behavioral changes, start jotting them now. It helped to remind me of my decision when guilt stabbed at me. My reasons were pretty straightforward although it didn't make it any easier on that final decision:

1. Safety for DH and myself.
2. Deterioration of my physical and mental health.
3. Deterioration of his sanitary needs.
4. Lack of engagement in activities and mental stimulation for DH.

It's been 2 months since DH's placement and his disease progression seems to be leveling out (knock on wood) instead of the steady decline when he was at home. But with LBD patients, it could change on the drop of a dime. I'm bracing for the next sudden drop.

TyZay

To everyone: you have no idea how your words have helped me. Every comment shared had something I could relate to.

You all are the most caring people. It will be a long journey but I hope in the end to somehow find peace. Thank you.

Dio

I actually had long conversations with DH, when he was still having some lucidity, in which I explained to him the need to research facilities and set him up with long-term care in case something happened to me, that he'll be well cared for, that he won't become homeless and out on the streets. I think it comforted him, so he was quite aware that he'd be placed although he kept asking, "But not right now, right?" Of course, he wasn't ready then. A few months later, he was in a very different behavioral state, so I kept everything mum from him. Now that he's placed, I think the prep work helped him understand why he's not home...although nothing is easy on this journey. I don't think placement is the end of our worries and troubles. At least, I get some "me time" back and am freed from 24/7 caregiving.

Ed1937

Dio, I know how hard that was, and I'm sorry. But you know you did what needed to be done. I hope you can begin "living" again.

Denise1847

Dear Tyzay,

One of the posts I read awhile ago echos now. It went something like, wife fed up with DH's behavior etc. said to her DH, "can you tell me why you are more important than me?" Translate this to fill in the blanks: your health, your life, your sanity etc. There is a point when you are at your breaking point. Please be prepared for that time. Please take care of yourself.

TyZay

Can’t thank you enough for your kind comments and I appreciate your support. But it’s a nightmare we’re not waking up from it.

CStrope

Everything everyone has already offered is spot on. I think the struggle for me is that I always had this mental checklist of things that would have to happen that would signal me that it was time to place my husband. Never did I consider a checklist of things that would be happening to me that would cause me to place him. So at this point, he has not met all the things on the checklist I had for him, yet I know that I'm getting close to placement because I just can't do it anymore. I am trying to work a very demanding full-time job from home while being a caretaker. We have 2 grown and single children that help when they can, but otherwise its just me. It is very difficult to admit that placement will not come because has progressed to a certain point, but because I can no longer take the stress of it all.

[Deleted User]

The user and all related content has been deleted.

Denise1847

Thank you Victoria.

That video really made an impact. I wonder when it is all over if all one remembers is the struggle, the guilt and the sadness or will we get to a point when we can look beyond those ugly things to good memories. What a nightmare we are all in and you just want to wake up. With other diseases, the loved one gets sick, they still have their personality, and you journey with their personality in tact to the end, which is a briefer journey. With this disease, the journey deteriorates the person till there is nothing left. It is so long and arduous that it becomes your disease.

TyZay

Thank you Denise, this video made an impact on me as well.