A Caregiver’s Life Raft

Water is on my mind. Not the surge of spring rains that make a swamp of my lawn. But the streams and lakes which mirror the flood of emotions set loose by dementia. The storms of this disease feel as vast and deep as the waters of Noah’s flood.

If each caregiver built an ark and invited pairs of friends in, two by two, their boat might still feel empty. People — even many we love — treat the disease like today’s version of leprosy. No one’s getting in that ark unless they’re forced. They prefer to swim alone.

My plan is to make a nice raft. They’re easy to build, and the sun can shine down on each delusion and fit. The raft will be made of all the laughter I’ve shared with my mom: buoyant, silly times when she used the wrong word and somehow spoke better truth. Those moments would be lined up vertically and woven through with dark days which tested our patience and made us strong. The posts of the raft will be lashed with love, hugs looped in and out around each edge. Nothing could hold us more tightly together. What is love if not a tie that binds?

Pontoons go below, to give us hope and keep our heads above water as waves of madness hit. We’ll float and paddle ‘til we’re shoved off to stranger currents. I’ll need a rope to haul myself back when Mom finally gets pulled to the other shore. Charon will throw his hood back and call her to his boat.

I can’t go with her yet. The raft is where I’ll stay. But alone, the waves of life will never feel the same. These treacherous tides have taught me far too much. And that love between the seams is something I won’t travel without.

5 Responses to A Caregiver’s Life Raft

  1. I love all the articles you have for the families dealing with Alzheimeirs. I have been a caregiver for both of my parents. Now, only my Mom. It has been 12 yrs. now. I have only one of my three brothers to help. I am getting into a real bad depression again. I have mood disorder. My brothers are working me 70 some plus hrs. 6 days a wk. I don’t think I can do it much longer. I don’t get any help from my brothers. They get mad if I say something!

    • Sorry I did not reply here. But I think I may have written back on the Facebook page. I had a similar problem, but part of it was distance — my sister lived nearly two hours from the house where I was caring for my mom. At the same time, another part was my fault. I didn’t really explain to her how difficult it was for me. I shouldered the burdens and only spoke out when I was angry and over my limit. Finally, we had a sit down conversation when I was calm and I told her she had to get more involved or miss the chance to get close to my mom while she’s still here. Now she gives 1000% more. I’m not sure you can get the same results from your brothers. Other female caregivers have complained to me that their brothers don’t think it’s their job. But I also know examples of brothers who did a tremendous amount of work to care for their parents (usually mom). Maybe you should try a scripted sit-down conversation where you calmly and persistently tell them that you REQUIRE several specific kinds of help. Virtual hugs to you.

      • The plan appears quite choerpmensive. To carry out the plan and based on the size of the state and sad but true inequities in available services, a team of coordinators may be required as opposed to one person or satellite coordinators simply to gather all the necessary information to move forward. The current tool used for assesment for facility placement is inadequate and does not allow for a true reflection of needs or remaining areas of strength which are equally important. The people I see starting to get lost more in the service cracks are those with the dementias such as Pick’s and Lewy Body that people are basically scared of because they are only aware of negative aspects and have little to no postive behavior support available either through training or from the community. These are also the persons most difficult to try to support in the home. Thank you to all who worked obviously very long and hard on this plan.

  2. Many years..now.almost 30,caring for what one identifies with”,Our Last Chapter”,my heart only sings with joy,when we connect..when we both meet eye to eye,heart to heart,and there we meet comfort to know there not going to know anymore alone..anymore,god will help me,help em home…its not a lonely bridge,but a well lite bridge..we shall cross together..thank you for this site .! Diana

  3. dear buddy .i am sending this site to an old freind coping with her husband’s health. i thank you sincerely for such a beautiful sharing. my freind will benefit from this so much. blessings, and keep dancing in your garden. cathy

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