“Caregiving sneaked up on me,” Janet told her group. “LBD stole our relationship as best friends, lovers, and co-decision makers and left us with a caregiver-patient relationship neither of us wanted. He feels totally dependent on me and I feel overwhelmed and overworked. Don’t get me wrong. I still love Mark and want to care for him. But, if it weren’t for all of you, I’d feel so alone.”
Many LBD caregivers are in Janet’s shoes. Some don’t have a support group and so for them, it’s even worse. Caregiver stress is a very real part of the LBD picture. And remember, your loved ones reflect all of your feelings and so if you are stressed, they are too. Caregiver care is NOT a luxury. It is as much a part of your loved one’s treatment as the dementia drugs and good behavior management. Here are some steps to decrease your stress:
1.Early in your LBD journey, institute a “day out” for yourself. You may not feel the need for it yet, but the goal now is to get your loved one used to you going off for a few hours—and coming back refreshed. If you make this a part of your regular routine now, it will be easier for your loved one to accept later, when they are more dependent.
2. Find a support group. Any caregivers support group is helpful, but a dementia caregiver’s group is better and one specifically for LBD is best. You need a place to vent, to ask questions and find answers, and to know that you aren’t alone. Find an online LBD group too. They especially valuable if you don’t have a local LBD group and are great for 3am venting. Research has shown that caregivers who have a support group can keep their loved ones at home longer. I've listed some links to support groups at the end of this blog.
3. As your caregiving job gets more difficult, consider home health care. Again, this is NOT a luxury. It will extend the time you can keep your loved one at home and it is much less expensive than residential care. Not only does it take some of the physical load off your shoulders, it also gives you time to get out of the house and do something for yourself.
4. Hire a "housekeeper." If your loved one is still able to care for himself but you are hesitant to leave him alone, consider hiring someone to do “housekeeping” for a few hours a week (or oftener) with the understanding that part of their job is to keep your loved one safe. This may be easier for your loved one to accept and it still makes it possible for you to get some respite, knowing your loved one is in good care.
5. Consider adult day care. If you are working, this may be a necessity unless you can find someone to come into your home. If you aren’t, it can give you a few hours of respite a day or a week. Again, start this as early in the LBD journey as you can so that it becomes a routine. Sometimes, staff will welcome early dementia patients as “volunteers.”
6. Consider residential placement without guilt. When, even with extra help, you are feeling stressed, it is time—probably past time—for residential placement. Again, this is not just for you. Nancy put it this way, “When I finally gave in and put Ed in a residential home, we got our marriage back. When I didn’t have to spend my energy and time on physical caregiving, I could be Ed’s wife and companion again.” Maria said, “I felt so guilty about having to put Gary into an assisted living program. But after a few months, I discovered that with adequate sleep and more self-care, I was a better person—and a better caregiver. I was more caring and patient with Gary. Now I wish I’d done it sooner.”
Links for LBD Caregiver Support Groups:
Caregiver Support Group Links:
Local LBD Caregiver groups. Also check with your local Alzheimer’s Chapter. Some have LBD specific support groups. We’ve been to two (Irvine, CA and Seattle, WA) and found them very Lewy-savvy and supportive.
LBDA Forums (like online support groups for anyone, divided into topics)
Caring Spouses (spouses only)
LBD Caregivers (for anyone).