Caregiving for Dementia: How to Support with RA
November is Alzheimer's Awareness Month and National Family Caregivers Month. HealthCentral is marking this with contributions from a number of our sites about Alzheimer's, dementia and caregiving. Check out our special Alzheimer's Awareness Page for links to all the posts.
For three years, we watched my father disappear, moving a little bit further away from us every day. He'd had a large stroke and managed to battle back from that, but then came another. And another and another, small TIAs and seizures happening often enough that the brain damage continued, giving him vascular dementia. It wreaked havoc on his mind and body and devastated our family.
With our aging population, more and more of us will experience having a family member who has dementia and it's likely you'll likely be involved in some aspect of caregiving. Taking care of a family member with dementia is emotionally and physically taxing. Even with accessing caregiving supports like respite care, home care, etc., it can be extremely hard for those of us who live with a chronic illness like RA to take care of a loved one with dementia.
But what if you can't? What if your RA affects you to such a degree that you can't provide care? Before it became necessary to admit my father to a nursing home, my mother was the primary caregiver. My sister lived in another city, making it impossible for her to help and as for me? My RA has given me a disability and I need attendant care myself, so couldn't help, either. Watching my father get buried by the inexorable march of dementia made me feel utterly helpless. Watching my mother get buried under the stress of taking care of my dad 24 hours a day, seven days a week made me feel completely useless, as well.
In the end, I discovered that there are more ways of caregiving than I thought were possible when your own body is hit hard by RA. Ways of helping ease the load, ways of being useful.
Be a Stress Sponge
Caregiving for someone who has dementia is incredibly stressful, so much so that such caregivers have a higher risk of developing autoimmune diseases, depression and heart attacks. Caregiving is also demanding physically, even when you don't have a chronic illness. The stress builds and builds and can impact a caregiver's ability to cope and continue to care well for their loved one. They need to have a safe place to release the stress, to talk, vent and cry. You can be the voice on the other end of the phone, absorbing the stress like a sponge absorbing water. Having someone who listens and supports can be an invaluable tool to help the caregiver get through the next day.
Be a Resource
Every now and again, there'll be a situation that needs research or other resources and the caregiver has so much on their plate they don't have the time or energy to look into it. You can support them and the person with dementia by taking over certain tasks. Two years into our journey with dementia, my father started wandering. Trying to keep him from moving was very stressful for him, as well as for my mother. We realized it was time for him to move into a nursing home with a locked ward so he could wander to his heart's content. I took on the job of finding selection of such places and touring them to narrow down the possibilities.
Finding information and resources involves doing research on the Internet or on the phone. You can be the perfect person for this. You already have research skills from finding information about RA and your ability to navigate the health care system can make you an excellent advocate.
Be a Presence
The caregiver is not the only person who needs your support - the person who has dementia needs you, too. When they move into a full-time care facility you can help both of them by being a presence.
Frequent visitors improve the quality of care your loved one gets and reduces the possibility of elder abuse and neglect in nursing homes. A friend of mine who worked in a nursing home advised us to visit frequently at unpredictable times. If the staff never know when to expect you, they will make sure your loved one is always receiving good care.
Many caregivers visit their loved one daily once they move to a nursing home. Taking over some of those visits can be a relief to the continuing stress. As well, even though the person may be receiving excellent care, meal times can be a challenge for busy staff who have many people needing assistance. I used to visit my father several times a week, usually at meal times. When I was there, I could help my dad make choices about food and when he lost the sense of what cutlery was for, I fed him. By being there, I gave my mother a day off and made sure my father had a visitor, but I didn't just do it to help them. Being able to nourish and nurture my father after all the years where he had done the same for me became treasured moments.
Be a Voice
When dementia progresses, it can take the person's ability to speak. When thus happens, you voice becomes even more important. When my father lost his ability to speak, we still spoke to him. We had conversations, told him what was happening in the world and in our days and I took up reading to him. As I read, he was engaged and alert, reacting to the events in the story.
As the dementia progressed, it becomes harder and harder to reach the person, but there are still ways of connecting. I remember visiting my father close to Christmas about three months before he died and sitting with him at lunch time, surrounded by the red and gold Christmas decorations and the sound of soft carols. He was hunched over in his wheelchair, not eating, far away in the mystery land of dementia. For some reason, I started singing Danish Christmas carols and he looked up and into my face and I sang every Christmas carol I knew and then I sang them again until he sank back into the mists. It was the last time we truly connected.
Caregiving is about so much more than just the physical tasks. Even though your body might not allow you to help physically, there are still important ways in which you can contribute. It will help the caregiver, the person with dementia and it will also help you. Sometimes, when your body can't, you can feel useless. Finding ways of nurturing others can remind you that you're anything but useless.
Lene Andersen is the author of the award-winning blog The Seated View.