It’s so easy to lament all the things an Alzheimer’s patient has lost, and that’s mostly because the issues are staring us in the face. Everyone’s journey is different, yet some of the observable losses in those suffering from this disease include progressive inabilities to use the phone, handle finances, select proper clothing, or actively engage in conversations. Despite that, caregivers can make a conscious effort to look for and celebrate even small things that a loved one may still be able to do. I remember the surprise and joy I felt watching residents who were non-verbal join in weekly sing-alongs I conducted when I visited my mother. People who did not know their names or what day of the week it was could easily recall verses and tunes to songs they had sung decades before.
This video shows how Paul Harvey’s son focuses on the musical ability that his 80-year old father still has, and how that impacted the lives of others when he chose to see the glass as still being half full. I’d love to hear your thoughts once you see their story.
Nov. 4, 2020 – After you’ve taken the plunge and set aside some time for yourself, you wonder why your nephew didn’t do anything else at your house other than just sitting with your husband until you got back. But the truth is, sometimes people don’t know what they can do. They may think their support is not needed, or maybe we simply didn’t ask them. Spare yourself grief (or even anger) by beginning to voice your needs directly. The next time the nephew steps in, let him know you need him to fold the laundry or trim your husband’s fingernails also; assign him a task that would lighten your load.
People will always say, “If you need anything, call me.” Don’t wait for people (even other family members) to figure out what needs to be done. Learn to delegate responsibilities within the family and follow up on offers to call if you need assistance. You will find that others are willing to help when we voice our needs and let them.
When you are busy caring for others, it’s easy to forget to set aside a specific time to care for yourself. We sometimes feel guilty doing that because the person we are caring for needs us so much. It’s similar to how first-time parents are reluctant to leave their child with a baby sitter. But all the research tells us that caregivers have to learn to care for themselves so that they can more effectively care for others. You have to put aside the ‘what-ifs’ and select something you can do for yourself that is not connected to your responsibilities.
My brother said that he chose a day to play tennis each week; it provided a release for whatever angst he may have felt after visiting my mother and experiencing whatever stage of Alzheimer’s she was exhibiting at the time. In addition to journaling periodically, I turned one night a week into my “spa” night at home.
We have to take time for ourselves, our other relationships, and our lives in general. So, I encourage you to choose your day as well. Think of something you may have even stopped doing when you became a caregiver. If it nurtures your soul, go back to it. It’s not selfish; it’s survival. Feel free to use this space to share with me and others what your self-care activity will be. Thanks.
I once heard a presenter joke that one good thing about her mother having Alzheimer’s was that she didn’t always have to cook because her mother didn’t remember that she had not eaten. That didn’t seem funny to me, and I wondered why she was joking about Alzheimer’s. After my mom was diagnosed, I realized the presenter was not laughing at the illness, but she was finding a way to ease some of the intensity of caregiving.
I found that I had to learn to laugh also, as I did when Mom asked me if my mother was still living. Inwardly, I was heartbroken that she didn’t know me. But I told her that she was my mother, then laughed and asked her if she was feeling faint or if she was trying to tell me something. Some of the laughter was so that she wouldn’t feel bad; but it was also to keep me from falling apart in front of her. I have learned that laughter truly is good self-medication. How has laughter helped you in your role as a caregiver?
“Mom’s doctor prescribed a medicine that would help slow the process and allow her to make mental connections, but the truth that there was no cure for Alzheimer’s carried the most weight in my heart. It was not a cold she could get over; there was no invading lump or tumor that could be removed. It was and would be a new way of life for her and for her family. His advice was that we get her business together as soon as possible – while she could still remember things. He also advised that I find a support group for myself, indicating that I would need it.” (Excerpt from Learning to Love Olivia: A Daughter’s Journal of Her Mother’s Journey Through Alzheimer’s)
How did accepting the diagnosis of your loved one impact your life? Was it a sense of hopeless resignation; was it empowering acceptance, or was it something else?
You don’t have to be alone. One of the most important ways you can care for yourself while you care for a loved one is to create a support system. In caring for my mother, we first had a family meeting with her to discuss her diagnosis and to let her know we were going to do our best for her. But even in large families, the load is not always equally shared, due to geography, finances, or general mindsets. I used to say that although all my six siblings had tickets to the same Alzheimer’s journey as I did with my mother, others were farther back on the train; and some never got on.
Caregivers with few or no other family members to rely on, will have to find a support system outside the family. There may be other friends, church members, or colleagues who are willing to step in when they know what the need is. This could just be having another person who is willing to listen when you need to vent or having someone who can run the errands you do not have the time or energy to do. You can also strengthen your support team by accessing community services that provide respite for caregivers.
How have you been able to support yourself in the caregiving process?