I still have guilt

Sunrise24

I have not been on this site for quite some time. My dh has been in mc for just over a year. His short term memory is horrible but I still keep having thoughts of bringing him home. The mc staff are great and he goes on an occasional outing to get ice cream or some sort of treat. He is still high functioning. He saw a worker whose arms were filled with packages and he immediately got up and opened doors for her. I brought him home a few weeks ago and he used leaf blower on our deck. I turned it on but he even did the chairs without any prompting.. He comes to grocery store with me and will always want to carry bags. He has many of these good moments and then he told me he bought a car or ask if I have ever met his brother (I have.. we have been married for 26 years). Told staff he had no children but he has two daughters. Told me he just wants to hold me and make love to me and never let me go. 80% of the residents where he is are far more into disease than him. The staff try to engage him as much as possible.. Sorry this is so lengthy but I wanted to show a clear picture of where he is at in disease… Cost is prohibitive and I just wonder if I gave up too quickly and whether or not I should try to care for him at home….. thoughts???

Denise1847

Hi Sunrise,

Thoughts to consider: What were the reasons he was placed in MC? Is it possible for a trial at home for a day or two or will that cause adaptation problems?

Ed1937

Denise said exactly what I would say. Why was he placed? Whatever the reason, it is likely to return. I would not bring him home if the reason was that your life could have been in danger with him there. Lady Texan brought her husband home successfully, but I don't think that happens very often.

Palmetto Peg

Your DH may be doing as well as he is due to the environment at the MC where he is living. There is more stimulation and there are more people looking after him than you could ever duplicate at home. Why not enjoy being able to have him at home with you occasionally and know that he is thriving there. I also agree that you should remember why you placed him initially. It is likely that his behavior would regress once he is moved out of what is now his familiar environment. Of course, only you know the financial implications of leaving him there, and ultimately the decision has to be yours. Good luck with whichever way you decide to go!

toolbeltexpert

Sunrise your emotions are common, I feel the same way, but I have made my bed so to say after I sold and moved. I have kept the videos of why I placed and I never want to watch them. My dw gets so much socialization which I think is the best thing for her. Like you said cost is a major consideration, not knowing "how long."

I can make plans for her care for as long as it takes, its the can I fund it? Such a tough thing to do and it isn't any easier on you. I am gettting back out and socializing and making new friends trying to live to the extent that guilt lets me.

It has helped me though and I hope you get some peace about everything

Stewart

Sunrise24

Thanks for your feedback folks!! Toolbeltexpert: I know I have communicated with you before… two years ago my dh had a bad psychotic break. The meds have been adjusted and he is has had no recurrence… His NP who manages his meds says I could certainly bring him home but at what cost to me… she said that he now gets my best self…. Cost is certainly an issue but I can suck it up for at least another 6-8 months… we have an application in at a local Veterans Home which would be a ninth of cost! I guess I just feel guilty and wonder if I am throwing in the towel too early and not honoring my vows to him…..

Jeanne C.

Oh Sunrise, you made me cry. Of course you're honoring your vows regardless of what you decide. You love him and are doing your best to make sure he's safe and cared for... and frankly that includes taking care of yourself.

CorrieG

Anyone who agonizes over placing their loved one in a facility probably didn't 'throw in the towel' at all. The fact that you are second guessing his placement tells me that you want what's best for him and are struggling to provide that. I don't think most of us get that defining moment that says, 'yes, absolutely, this is exactly what you should do!"

Regardless of what you do, I believe you love your husband and any choice you make is going to be the right one for you and your family.

Joe C.

I placed DW 19 months ago and I still think of bringing her home but I remind myself just how difficult it was for both us when she was home. I think your thoughts and feeling are totally normal especially if you had a good life together. None of this is easy!

Sunrise24

Thank each and every one of your insightful and supportive comments……brought tears to my eyes….. It is so hard when your heart wants one thing but your head tells you another…..💔

Sunrise24

DH had a neurology visit last week and he has had a bit of a decline. He seems more confused lately and told me he bought a car. He asks if he should go visit his mother who passed away about 15 years ago. He is still very observant… I was rubbing my knee because if an itch and he said “what’s wrong? Is you knee bothering you?” He still makes jokes and can make people laugh. Staff at MC notice a bit of a decline as well. He really can’t communicate with the other residents and I feel that it is contributing to his decline.. A staff member there is concerned about him too. Apparently he wanted to talk to a resident and asked a question and the resident responded with a statement that made no sense so my DH just waved his hand and said never mind… I took him for a ride yesterday and when we were returning, he said oh, so you are bringing me back to prison…. Ugh….. I feel like just bringing him home… he can sit around here just as well… He does have difficulty walking so uses a cane.. I am there just about every day and spend the whole afternoon with him… Because of cost to have him there, I do very little with myself.. I work at his nephew’s bagel shop two days a week and might see friends for a breakfast but that is it….. otherwise I am home… 😵‍💫

Denise1847

Dear Sunrise,

This guilt that is tearing at you is a part of the Alzheimer's disease that attacks caregivers. Please see it as that. I think each one of us on any given day questions whether we are doing enough. We fear the next step, we are always focused on the unknown and when our LO's are placed, we falsely accuse ourselves of not doing enough. Please first off this sickness for yourself. You have no reason to feel guilty - it is just the disease that is talking and trying to take you down too.

Sunrise, as your name implies, rise out of the grips of this disease and live the life you deserve.

Sunrise24

Dear Denise1847: Thanks for your comment….it is something that I struggle with on a daily basis…. I really feel as though he would do better at home but at what cost to me and that is where a lot of the guilt plays in…. I think I also get those feelings of not doing enough when I see so many others taking care of their spouses at home and thinking “are they just so much stronger and more compassionate than me?

loveskitties

Dear Sunrise24, what you see from the "outside looking in" at how others are taking care of their spouses at home is not necessarily a reflection of how things really are.

Each PWD is different, each caregiver is different, each set of circumstances is different. There is no real comparison to be made.

What needs to guide you is his well being and safety, as well as yours. No matter what you may think or feel, there is no shame in not being able to keep him at home.

With a LO with dementia, you can only make decisions based on circumstances at the time...second guessing is of no value.

From what you wrote, you are still able to have some "quality" time with him. That is a win for you both.

CStrope

Sunrise, if someone had asked me 2 months ago how things were going, I would have told them that I was in the process of trying to place DH. But I have pulled him off all of his anti-psychotic meds and only give him his anti-depressant. His dillusions are horrible, talking to himself and the pillows all day, but all other aspects are much better. So right now I can handle the rambling, and will most likely put off placing him at this time. Yes, cost of care is an issue for us too, and at this point I ask myself if placing him would make things better for him or me. I guess until the answer to that question is not just to improve my life I'll continue to try and keep him home for a bit. I continue to work a demanding and full time job from home.

CaliforniaGirl-1

The hardest thing of all is separating our guilt and our dream of what their lives should be like and just accepting what they need.

Don't feel bad about thinking about yourself as well. My LO's physician said, "there are 2 people in this caregiving relationship and the needs of one are not more important than the needs of other." Guess he has seen a lot of this.

Quilting brings calm

Sunshine…. 1/3 of caregivers die before their loved one. The stress and neglect of their own physical health is often the culprit. This disease is going to take your spouse - don’t let it take you too. He’s going to decline no matter where he is.

Dio

Sunrise, I totally understand. I'm going through the same, wondering whether I would cave if he asked to come home. Family and friends are trying hard to keep my sanity straight. I try very hard to place myself first. It's a disservice to your LO and yourself if you collapsed. At, least, this is what I have to tell myself everytime doubt creeps in.

Sunrise24

Thank you all for your comments… It is true that there are two people involved and that is definitely a concern of mine… If something were to happen to me, no one would be able to care for him while I was incapacitated….. I do have family and friends who are very supportive…. maybe I am somehow still struggling to come to terms with the reality of my DH slipping away and that my former life is gone….. CStrope: I worry about stopping anti-psych meds…. the delusions could endanger you both… please stay safe……. Thank you all for your feedback and support!!!❤️

Sunrise24

toolbeltexpert

Sunrise you are doing a wonderful job, there is not one of us,whether they are caring for their lo at home or have placed, thinks of the other as falling short in some way, I too have done the comparison thing. There are several caregiver who somehow are able to go above what most can endure, but I don't know all the nuances that allow for them to do what they do.

I often feel exactly the same as you. I have known church members who cared for their lo right up to the end,though none had dementia. They inspired me, but those situations were not mine. As a pastor I wonder why can't I do this, why can't I just do it. I would probably have died by now if I tried to stay that course. 24/7 caregiving is brutal. I do hope you can get that lower cost option and slowly allow yourself that freedom from guilt because it doesn't happen overnight. I hope nothing I have said causes you or anyone else and any doubts or upsets anyone.

ghphotog

Just placed my mother in MC and she has cursed me for it and hopes I feel guilty the rest of my life so I understand the guilt very well. My wife is ready for MC as well now but it's a bit easier if she's the only one I have to deal with. I'm hoping I can handle her a while longer but the truth is I'm looking forward to the day my DW is too far gone to know any more and that feeling itself brings guilt. I love her but need to breathe again. Hang in there!

Timothy.Storey

I placed DW in a care home one month ago. I keep thinking about how I could bring her back home, but then I remember how bad the year has been for both of us. She is getting the care she needs and is safe where she is. The situation at home was not like that. After almost 5 years of being the sole caregiver, I was starting to suffer stress related problems.

Sunrise24

Thank you all again for feedback…. ❤️. I need that reinforcement …. Toolbeltexpert: No offense taken by anything you say… it is and has in the past, been helpful to me….