It was 2007 when I observed my wife’s first symptoms of Alzheimer’s disease (AD). In 2009, Clare was officially diagnosed with early or young onset AD and by 2010 Clare’s decline had progressed to the point where I could no longer leave her alone. I became her 24/7 caregiver. Sometime in 2011, however, I realized that I needed some respite time. Initially I enrolled Clare in a day care program for 4 hours a day, once day a week, but eventually that grew to 22 hours of day care each week. Other than those 22 hours, I was with Clare for almost every second of every day, and all of my needs were placed on the proverbial back burner.
Clare was my #1 priority and anything I needed or wanted to do for myself that couldn’t get done during those hours of respite time just didn’t get done. When Clare’s needs were such that I had to place her in the dementia unit of an assisted living facility (ALF) in September, 2013, I slowly but surely morphed from 24/7 caregiver to 24/7 advocate. Clare’s ALF is now responsible for Clare’s activities of daily living except when she accompanies me outside of the ALF, so I no longer view my role mainly as her caregiver. I now see my role mainly as Clare’s advocate, making sure that she is receiving the best possible care in her ALF.
Clare remains my #1 priority. However, unlike those years when I was her 24/7 caregiver, I am now able to do almost anything I want or need to do each day. The daily time I spend with Clare remains sacrosanct, unless I am not home and unable to visit with Clare. (I have recently started taking occasional weeklong trips to visit our son and family in Michigan.) But whether home or away, I am now able to take much better care of myself in ways I simply could not do before. Daily advocacy has its stress, but nothing like the stress of daily caregiving.
Unfortunately, too many caregivers often sacrifice their own care when they are responsible for a loved one with Alzheimer’s. I know that was true of me, and I know that was true of everyone else in my Alzheimer’s spouse support group.
Caregivers give up personal care
Once I could not leave Clare alone anymore, golf was one of the first things that went out the window. Our daughter volunteered to be with Clare while I went golfing on the weekend, but I felt guilty being away from home for so long. I also knew that Clare wanted to be with me, not our daughter, so I couldn’t even enjoy my golf. After going twice, I thanked our daughter but I put my golf clubs away. Other hobbies and interests also ended once I had to be with Clare all the time.
Every caregiver gives up some favorite activities as the price of being a full-time caregiver. Even simple “home activities” often go out the window. For example, at a certain point I could not do anything at home by myself if Clare was awake. She would sit and watch TV all day long, and if I weren’t sitting next to her she would get up, find me, and hover next to me until I joined her on the couch.
It’s a lot more, though, than just giving up favorite activities or hobbies. Many caregivers put off their own health needs if they interfere with their caregiving responsibilities. In my situation, I had severe left hip and leg pain and had to walk with a cane for nearly a year. I was walking so “lopsided” to try to reduce the hip pain that my left knee was aching and my leg was swollen. However, I waited to deal with this pain until after Clare was admitted to her ALF so I knew that she would be well cared for if I needed hospitalization. Unfortunately, I had put off dealing with my hip pain for so long that by the time I went to the orthopedic surgeon, my left hip was bone on bone. All the cartilage was gone and I needed complete hip replacement surgery, followed by rehabilitation therapy. Some caregivers in my support group scheduled chemo sessions for cancer when their spouses were in day care programs, not because it was the best time for their chemo but because it was the only time their spouses would not be impacted.
Caregivers are prone to experiencing personal health issues
All caregivers for loved ones with Alzheimer’s deal with many of the same issues, but not all are the same for everyone. For some, their major stress may come from having to deal with a major personality change in their loved one. A person with Alzheimer’s may suddenly become verbally abusive or physically aggressive, even trying to physically harm their caregivers. For some caregivers, being asked the same question over and over and over again (I used to refer to this as Clare’s “groundhog day loop’), or constantly having to search their house for missing or misplaced objects, or the inability of their loved ones to follow even the simplest one-step direction are their major causes of daily stress.
For some caregivers, their major stress results from having to not only deal with Alzheimer’s, but also having to cope with their loved ones having complications arising from other diseases such as diabetes or Parkinson’s. Just lifting a loved one into and out of a bed, chair, or sofa, let alone into or out of a wheelchair can become too difficult. Trying to transport that person and helping that person and then having to then lift that wheelchair into and out of a car can become a major issue. And for increasing numbers of caregivers, their greatest stressors come from the financial side of Alzheimer’s ... worries about how to pay for aides or companions to stay with their loved ones at home, or day care programs, let alone the high costs of long term assisted living or nursing home placements.
Daily stress and/or anxiety and/or depression caused by these and other matters can be devastating to a caregiver’s health. It has been estimated that as many as 40% of Alzheimer’s caregivers may be suffering from depression. Many caregivers suddenly find themselves having to deal with the effects of high blood pressure, weight gain or loss due to newly developed poor eating habits, stress headaches, or difficulties sleeping. And many caregivers simply find themselves in a continuous state of mental, physical, and emotional exhaustion at the end of every day.
It is not unusual to learn that caregivers are spending some of their limited “respite time” in doctors’ offices to receive check-ups followed by medications for various ailments that are a direct result of the effects of their caregiving. And it is also not unusual for caregivers to see a therapist, psychologist, or psychiatrist for help to get them through all of their daily anxiety and/or stress and/or depression. Whether it is postponing treatment for a medical condition, having to take new medication, or engaging in some form of therapy, most caregivers find their health impacted by the daily care they provide for their loved ones.
How caregivers can take better care their own needs
I know of no ways to completely eliminate the daily stress that caregivers find themselves facing when placing the needs of their loved ones ahead of their own. But there are some steps that caregivers can take to reduce some of their daily stress and increase possibilities for taking better care of themselves:
1. Find at least some respite time each week. For me, initially, I found respite time by placing Clare in day care programs. For others it is hiring part-time health aides or companions who stay with loved ones in their homes. For some it is a dependence upon a trusted friend or relative to provide some weekly respite relief. But some way, somehow, caregivers must find ways to provide themselves with at least some respite time to do what they need to do by themselves each week. This is when caregivers can place their needs first for a few hours each week. Once I placed Clare in her ALF, of course, respite time has become a non-issue for me. I now have all the available time I need to take care of my own personal health needs, despite having Clare remain as my #1 priority.
2. Consider temporary week-long respite placements. Many ALFs and other health or long term care facilities allow a person with Alzheimer’s to reside there for up to one week at a reasonable cost to provide temporary respite for caregivers. Facilities may do this to entice caregivers into considering full-time residential placement there for their loved ones somewhere down the line, or simply to fill up empty bed space. Regardless of the facility’s motive, if there is a suitable place near where you live that would give you a week all to yourself, then you should look into this as a possibility for respite. I know caregivers who regularly take advantage of such programs to literally “get away” to visit friends or relatives and avoid daily caregiving responsibilities so they can “recharge their batteries.”
3. Pamper yourself at least once each week. Some caregivers go for manicures and pedicures during respite time to get their minds temporarily off of caregiving, or go out to a movie theatre, or to a library or park to read a good book in peace and quiet without any distractions. For me, writing articles for publication during my respite time enabled me to take care of many of my emotional needs. Writing allows me to vent my emotions and feelings. After completing each article, even if battling tears while writing, I feel better. After my articles are published and I receive feedback from readers, it feels good to learn that I may be helping others through my writing. To this day I still find emotional release through writing, and more and more I am enjoying my correspondence with fellow caregivers who comment on my articles. Whatever works, all caregivers should try to find something that will reduce their stress on a regular basis.
4. Engage in some physical activity on a regular basis. Virtually all doctors recommend physical activity as a way to reduce stress. Walking is as basic as it comes, and a daily walk or any regular exercise would probably help many caregivers with diet and sleep issues as well. I was working out a few times a week while Clare was in day care programs until my hip/leg pain prevented me from doing so. After my surgery and rehab I returned to working out on a regular basis.
5. Relaxation techniques help many caregivers. Although I never tried these techniques, some caregivers report that they meditate for at least 15 minutes every day, or do tai chi or some other relaxation exercise to reduce their daily stress. Anything that is legal and helps a caregiver relax is probably helpful!
6. Visit your doctor. Caregivers feeling the effects of stress, anxiety, or depression ... if not eating well, not sleeping well, experiencing muscle pains or tightness, suffering from headaches, back aches, or feeling mentally, physically or emotionally drained each day ... must make time to see a doctor. Caring for a person with Alzheimer’s can easily lead to health issues for caregivers. A doctor may be able to suggest some diet, exercise, or treatment that caregivers can do during respite time or when loved ones are asleep. Doctors may recommend over-the-counter or prescription medication, or the name of a helpful therapist. At the very least, if not already doing so, caregivers should be sure to make time for an annual physical exam when blood pressure can be monitored. An annual physical exam will also insure that caregivers have the opportunity, in a timely manner, to receive proper vaccinations and any additional testing that a doctor feels is needed.
The bottom line for caregivers
Most caregivers will always place the needs of their loved ones ahead of their own. One would expect this to be true for caregivers in a loving relationship with the person who has AD, but this is also often true even for caregivers who did not have a particularly loving relationship with the person who has AD. Those who resent having to spend time as caregivers still often place that person’s needs ahead of their own due to feelings of guilt, or from a sense of duty grounded in religious or ethical reasons outside the realm of love.
For whatever reason, caregivers placing the needs of a person with Alzheimer’s ahead of their own must find time to attend to their own needs as best they can. Caregivers need to always be mindful that if they “go down,” who will be there to take care of their loved ones? That is why all caregivers, whether loving or resentful, must also learn to care for their own needs. Alzheimer’s caregivers need caring just as much as people with Alzheimer’s need caring.
Published in AFA Care Quarterly, Fall 2015, pp. 8-10. Access at: