Caregivers often feel guilty after placing their loved one in a memory care facility. Should they?
Alzheimer's Reading Room
The following question was asked by one of our readers. The answer is supplied by our expert - Rachael Wonderlin.
"Alan is so happy when I visit him, which is about 4 times a week for 3 or 4 hours at a time. I take him out in the car, play his favorite discs and he tries to sing and waves his hands in time to the music."
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"We sometimes have a meal out, but he can't sit still for very long, and wants to leave, but so far I've been able to manage him.
He is very good about my leaving him at the facility, often quite "jolly", but other times he is quiet and accepting, and that is when I tend to lose it once I get to the car.
I have a 35 minute highway drive back home, and once I start crying, there is no stopping it.
Is it guilt or the fact that I have to face reality and know he won't be coming back home?
Should I be involved in grief counseling, or help with depression?
I try to be "up" for him, but there is another problem in the fact that he doesn't interact with any of the other patients, only the staff, who love him because he is one of the easiest people in the group where he is housed.
He tends to spend a lot of his time in his room, and refuses to sit with others for meals. He will attend "Happy Hours" once a week if I accompany him, and does participate in some of the activities, but by and large, spends a lot of time alone,if I am not with him.
We are both 83 years old, and to be honest, I find spending all that time driving back and forth, as well as trying to keep him happy when I am with him, is beginning to take its' toll.
Hence, I assume, the bouts of crying on my part. What would you suggest I do Bob?
I have his name down for a transfer to a facility closer to home, but am concerned that if that possibility finally comes through, would it be disruptive to move Alan, since he has become accustomed to the staff where he is presently staying?
I should say, that he is in pretty good health at the moment, and not incontinent, but does need to be in a locked facility because of his tendency to try and escape. Sorry this has been a "book" instead of a simple question, but would really appreciate your take on my situation. Sincerely Maureen"
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The Answer
Hi Maureen (and other caregivers feeling the same way).
It sounds like you are feeling really guilty. You said it yourself: he’s so happy when you visit him, and he seems to be doing very well at the care community. Stop beating yourself up for moving him there! You are doing the best that you can!
We’ve all heard of “shaming” people—this idea that people will make others feel guilty for not feeling, acting, or doing the things that they are “expected” to do. I believe that there’s a new type of “shaming” reserved specifically for people who have moved loved ones into care communities.
Be it by word of mouth from others, or just from internal guilt, many caregivers feel like they “should have taken care of their loved one at home,” and honestly, it’s just not always that simple.
All of us cannot care for our loved ones at home. We all have different circumstances, and for many people, moving a loved one to a care community is the best possible solution to providing good care.
It’s okay to feel happy when he’s happy. It’s okay to feel guilty when he’s quiet. But never, never doubt that you are doing the best that you can for him. He is doing well at this care community. He seems to be enjoying himself most days. And really, that is all you can ask for.
I do think that you should look into some counseling. It is so helpful to have someone to talk to. See if the community, or a nearby location, offers a dementia care support group. My care community offers a support group that I run once a month for family caregivers, including people who don’t have loved ones who live here.
Also, it’s okay that he likes to spend time alone. Not all of us are outgoing, social people! And, even if he used to be, people do change a little bit when they have dementia. Perhaps being social was always a little difficult for him, and now that he has dementia, keeping to himself is more comfortable. That’s okay! As long as he is happy, that’s what matters.
I would not recommend moving him if you can help it. Moving someone with dementia is difficult on everyone, especially the person making that move. He may be more confused, agitated, and irritable—or maybe not. In any case, there is a risk involved in moving someone to a new place. He seems comfortable at that location, and the staff knows him well.
Let yourself off the hook. You sound like a wonderful caregiver. You clearly have his best interest in mind, and now it is time to put your own interests in the forefront of your brain. You need to find time for yourself.
If you aren’t in your best mental shape, how can you emotionally care for another person? Take some time to find out what you need in this world.
I am available for phone call assistance. If you’d like to talk more about your loved one’s care, sign up online and give me a call!
For more information on that, please visit my site, and follow along with my blog, www.dementia-by-day.com
Rachael Wonderlin is a memory care expert and writes at Dementia by Day. She is also the author of When Someone You Know Is Living in a Dementia Care Community, Words to Say and Things to Do which is being published by the Johns Hopkins University Press.
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Bob was able to make the best of a terrible situation with his mother dealing with Alzheimer’s, and he is continuing to help out other caregivers to this day so that they can take real, effective advice and make their situation better for their loved ones."Chirag Patel, MediciGroup Inc. (a BioClinica Company)