Taking care of yourself as a dementia caregiver is something most caregivers overlook. Very few of us choose to be a dementia caregiver as a career in our personal life. We end up there because someone close to us, usually a family member, is sick and needs our help. Most of us don’t have the money to hire round-the-clock caregivers to perform that task, so we take it upon ourselves out of love, or out of necessity, or both. Sometimes it just “falls in our lap” because we are the family’s logical choice or there is no one geographically closer. We are “tapped on the shoulder” and … “You’re It!”
If we become a caregiver for a spouse, the role is a bit easier, because we already know the person well, their likes and dislikes, and there is already a good relationship established (hopefully). We can ease into the role bit by bit as the needs arise.
Being a caregiver always involves sacrifice, but many big sacrifices are made on the part of an adult child taking care of a parent. There may be location changes, giving up or postponing a job, sacrificing vacations and independent self-directed living. It sounds like a big commitment, and it is.
With the right attitude, however, almost any caregiving experience can be fulfilling in the long run, knowing that we are giving the best care that we would want if places were reversed. We can only have this if we take care of ourselves physically, emotionally, and spiritually in the process. It is very hard work to plan for ourselves as well as the person for which we are caring, but it is the best way to emerge as a ‘whole’ person when the caregiving is over. Most of us, including myself, ignore our own needs and wants because fulfilling them takes more work. But if we do that, we exhaust ourselves to the point that we can’t continue due to health issues. We also begin to harbor feelings of resentment towards our care-partner. Planning some time away each week is a good way to keep ourselves refreshed and ready to go. Depending on how long the caregiving is likely to last, it is also important to include respite time (a week here or there) to relax and regain perspective. Sometimes these are arranged with the help of other family members who offer to come stay for the time you are away, or if need be, there are places in the community that offer respite care at a relatively reasonable price (or not). Look at it as a vacation for you both, you are just not together. Of course, this is dependent on whether your loved-one is willing to let others care for him/her for this period of time. [From the beginning of your journey with dementia, tell your care-partner that you will be with them the entire way as long as they gift to you periodic rests away from them to rejuvenate. Make this an agreed upon must.]
It was relatively easy in the early stages of Jim’s 19 years with Alzheimer’s to take time for me. In the first years of his disease, we were both working. By the time the diagnosis was made ten years later, Jim had retired but was very independent, and so it was still not a problem to get away. I worked for 7 years after Jim retired but as those years progressed, I went from full time to part time until 2009 when I quit work all together. Jim needed me at home. He was getting lost more and more. This was the time when it was difficult for me to take time for myself. I was afraid to leave him for more than a few hours alone. As the months went by, the increments I was comfortable leaving him became shorter and shorter. We had male friends who took Jim out once a week initially, but in the final 3 years that became more difficult because of Jim’s behavior during his continued decline. Of course, he didn’t see any reason why he would need a companion if I went out for a few hours, and could not remember those times where memory failed him: getting lost, leaving burners on with our gas stove, and forgetting where I said I was going and thinking he was abandoned which led to hours of anguish, fear, and tears.
Jim was young by Alzheimer’s standards, so placing him in senior day care was not a good fit. Most people were much older than he. We also had no family in the state that could help. I finally called an organization that provided a well chosen companion to take Jim places for 3 hours once a week. Six months after that I asked a college freshman neighbor to ‘house sit’ with Jim so I could go out in the evening occasionally. I paid the young man a good hourly wage, but less than the organization would have charged. Other than those instances in the last year, I took Jim almost everywhere I went. I did not have the option for respite. Jim was too aware of what was happening, and yet he felt he didn’t need to be looked after. He never would have agreed to respite while I went somewhere fun. I had my 3 hours a week, and I also had the better part each evening to myself. Jim would go to bed at 7:30 p.m., so I had until I went to bed to do what I wanted as long as I was at home. That was my respite! Without some form of rest/relaxation I couldn’t have stood the last 7 months of turmoil.
It’s easy for someone else to say, “hire a companion” or “take them to senior day care”, but as many of you know it is a lot harder to do. You are not dealing with a “thing”. You are dealing with another human being who has wants and needs. Will your loved-one be resistant? Will they refuse to go? And if your loved-one has early onset dementia-Alzheimer’s there probably is not a dedicated place of day care that is a good fit for their age. [It is a good idea from the beginning of your dementia journey together to discuss that you will be with them every step of the way as long as they give you occasional rests to rejuvenate away from them. That is the ultimate gift. If you discuss this often enough so that they still recall the agreement, perhaps even put it in writing so you can show it to them with a signature and a date.Then they have to believe it!]
The emotional part of taking steps to make time for yourself is a big undertaking by the caregiver and the care-partner. Both have to be willing to try it for the health of the caregiver. I finally became so overwhelmed that I forced the companion idea on Jim. He was not pleased, but he did not get outright angry and insisted the person had to be male. I stressed to him that he was agreeing to this in order to help me deal with the caregiving. I needed some worry-free time. The psychologist in him agreed. It actually turned out great, and Jim couldn’t wait for the companion to come again. Because that worked out well, did it make it easier to ask the college freshman to sit with Jim while I went out for the occasional evening? Of course not! I was shamed into it because the Alzheimer’s Association asked me to be on a panel about “Taking Care of Yourself, and Asking For Help”. I felt like such a hypocrite, that it spurred me into action. Thank you Alzheimer’s Association!
If you are lucky, finding someone to look after your loved-one will be as easy as “a friend knows a friend”, but if not, you may have to keep your eyes and ears open and take the plunge when you think some arrangement might work….it is so worthwhile when you do and you find a good match!
What will also make getting a companion successful is thinking of ideas for activities that they can do together that they would both like. That wasn’t easy for Jim’s stage of dementia. They went for walks on the Erie Canal, went for ice cream, flew a kite I bought for them, they went bowling, to the gym, and even swung on the swings at a park near us. I provided an envelope of money that the caregiver would carry that gave them money to spend for both of them. Jim’s companion even discussed some family problems (real or imagined) with Jim, and Jim responded by giving the companion hints on how to change the family dynamics. Jim never lost his psychology skills and loved helping the companion out. He felt needed, and a good companion will foster those feelings if they are really tuned in to their new “friend”.
Best wishes on your caregiving journey, and don’t be afraid to try new things!