I'm wracked with guilt for enjoying life again now that my husband is in a care home.
By Carol O'Dell, Caring.com contributing editor
I recently had to place my husband, who has Alzheimer's, in a nearby care home. I could check on him every day, but I'm not sure it's a good idea. When I leave, he gets teary and begs me to move in with him. He initiates sex, but maybe because of the dementia, he no longer feels like my husband that way. And he calls me ten times a day.
We can't afford for me to live there, and honestly, I don't want to. I've returned to church and see friends now -- it's been years since I've done this. But I feel guilty for enjoying my life again when he can't. And I feel guilty because I don't want to visit him every day. It's emotionally taxing -- for both of us.
How do I handle his incessant calls and demands?
You're in a strange place. You're married, and yet you can't go where your husband is headed. As spouses, we have to face that we probably won't die at the same time. And right now, it's your job to live. "'Til death do us part" doesn't mean we have to sacrifice our own life for our spouse.
Grieving doesn't start when the heart stops beating. You've doubtless been doing a lot of the emotional work of letting go of who he used to be, and that's why you're able to go to lunch, to laugh, and smile again. That certainly doesn't mean you're a bad person, or happy about what's happening. It means you're ready for the happiness you need and deserve.
Dementia impairs the ability to make sound decisions. You have to make the decisions for the two of you, and you know what's best. If your husband were of sound mind, he would want you to live your life to its fullest. Living a healthy, full life doesn't take anything away from him. Sadly, his dementia will get worse. Your instincts are right on -- becoming his roommate would be unwise, financially and emotionally, so don't even consider it. You must continue to move forward with your life.
Here are some tips to help you love and care for your husband without moving in or seeing him every day:
Get note cards and write yourself reassuring messages. Tape them around the house and in your car and read them out loud to yourself: "Take care of you." "( your husband's name) wants you to be happy." "Smile!" "It's okay to have fun!" "Call a friend." " _ is safe, and that is love." "It's time." "Trust yourself."
Don't have sex unless you want to. Dementia can make someone overly preoccupied with sex. Follow your heart. If sex doesn't feel natural, then you don't have to participate because you're his wife. It won't necessarily bring you closer or relieve his anxiety.
Wean yourself off of the constant phone calls. These only feed his compulsion. The care home will call you if you're needed or if there's an emergency. Call him as often as you're comfortable. You can also sometimes call your favorite nurse or nursing assistant to find out how he's doing.
Divert his attention when he's demanding. Find something that comforts him (the television, music, a topic of conversation or a hobby he likes).
Keep an open mind, and cherish the memory of your husband's old self. Your husband's anxiety may diminish -- he may come to accept his new home. But also know he may get worse. So hold the memory of your healthy husband and the life you had dear to your heart instead of getting too distraught over where he is today.
Visit his care home -- on your terms. Sometimes you might not be in the mood to see your husband, but if you connect with the staff, that helps him, too. You could buy a couple of pizzas, take in cookies, ask how he's doing, suggest things he likes.
Give yourself a little pep talk. Before and after visiting, take a look at those note cards and reassure yourself, out loud, that you're a good wife. It's time to build a life of your own. Tell yourself you have a good heart and you're doing the right thing -- for him and for you. Do this on the way in and on the way out. You're still his wife, still his advocate, but you're also so much more.
that its OK to keep having a life of your own, without guilt feelings. I'm not all there as yet but getting close.
this was very helpful because these are some of my feelings.my husband has only been in a care home for 2 months and it been very hard accepting that I did the right thing for both of us.
The expression of guilt. Ive been strugleing for somw time,but with help from my children and friends, who know here very well, I'm geting better at handling quilt. Lonelyness ,. I feel, has a great deal to do with feeling guilt.
I like that the writer provided steps for her that are doable. He also supported her right and desire to keep living outside of the facility and with healthy friends. He supported her dignity while acknowledging that he is still her husband.
I have a friend whose husband is in a nursing home and does not recognize her. She goes to NHC every day about 8:00 a.m. and stays until his bedtime around 6:00 p.m. In the years since he has been in the facility, she has lost weight, her face is drawn and exhaustion is visible throughout her body. I agree with the advise that was given, but I would add, this must be an individual, sou-searching decison that only the person can decide they can live with. Because at the end of the day, I think a person will always want to say with conviction", I truly did all that I could do for my loved one"
All of iut was helpfull .But aspecilly the Sex Part. I also feel Guilty and not injoyig it. Thank You for making me feel better about it
I am curious, now that one year has passed, how the original questioner is faring. I would imagine her husband has declined further in his capacity and this may give her some relief from the telephone calls and his other requests. One thing her questions do point out is the importance of learning about dementia. The more she knows the more aware she becomes and the less guilt she'll suffer knowing that many of his behaviors are a result of his dementia.
No one can convince you that you are doing the right thing but YOU. No amount of platitudes or well-meaning friends can do it, and you can't rush it. I know, Guilt is my middle name. My 95 yo mother is back in rehab for the 4th time, this time with compression fractures in her back. I know she is a little confused from pain meds [she's usually clear as a bell]. Not that she's above a little guilt-inducing behavior ordinarally, but when I tried to leave this afternoon, she cried and cried and begged me to stay, or call her a cab, but please don't leave her there, she'll die, etc, etc, etc.I finally just left, I felt that the longer I stayed, I was just postponing the inevitable. I know she can't come home, she can't even stand up. So yes I feel terrible, but I have to go to work in the AM and I have a husband and dog to hang out with. I just have to learn how to dealwith it
What an excellent topic. I thought the poster was writing about me, - except I'm not quite at the point of actually enjoying life. I'm still mourning a spouse who isn't dead yet, and I mourn the dreams we had for our future together. However, after 2 yrs of full time care giving, I felt relief when my husband was admitted to a skilled facility 2 months ago. Prior to the stroke that caused his recent admittance, I was physically and emotionally exhausted. I didn't realize it until now, but all my attention and energies have been focused on him. In the last few weeks I have begun reconnecting with my church and church groups. It feels wonderful. His doctors and the facility social worker say that he can not come home again unless we have an additional FT care worker. My husband has traumatic brain injury induced Alzheimer's. Now is impulsive and a danger to himself and me at home. I understand the poster's ambivalent feelings. When I'm home alone at night, I miss his company terribly. But when his therapists told him this week that he might be ready to return home soon, I felt panicky. I also understand her feelings of guilt. Prior to his recent admitance, all meals were planned around his diet, - soft or puree-able foods. Last night I had crispy shrimp, and recently had my first steak in over two years. My husband begs me to bring him home and can't understand why I can't. This is heart breaking. However, he has cut down on the many daily phone calls, - which is encouraging. I still visit him daily. Yesterday, I spent my birthday at the nursing home. Last night, after walking our dog, and bringing in the groceries, I still had to make dinner and complete unfinished medicaid LTC documentation. It occurred to me just how much of a F.T. job it is for me just to take care of myself, our pet, and our home. Now that the pressure is off, I realize just how hard it had become for me. I can't imagine how I could resume his FT care at home again. I feel guilt and also relief.
Hugs sop832
It's hard to add more to the previous response but another suggestion is to let the staff at the home know about his behavior (calling 10 times a day). They can be very helpful in checking on him, redirecting him, etc. They can also be invaluable in providing guidance and counsel to you. An Alzheimer's support group can also help you deal with your feelings. Bless you for all you've done to take good care of your husband. Now, it's time to take care of you.
Hugs MayGodBeTheGlory, sop832