On Being a Burden


When I imagine the end-stages of this disease, the fear of being a burden on my wife Marja or my children rears its head frequently. I don’t want my family to suffer from the responsibility to care for this decrepit old man, distorting their lives, creating resentment, and dominating their memories of me. I don’t want it… and it seems almost unavoidable.

But what’s so wrong with being a burden?

Certainly much of my distaste derives from the hyper-individualism of our culture: Being dependent on another person just feels shameful to me, somehow morally irresponsible. In other cultures—even in westernized Finland where Marja grew up—taking on the care of family and community members is much more an expected part of life, not an exceptional burden. Here, it feels to me, it’s disgraceful.

Part of my fear is just my personal revulsion at being fed, being dressed by others, wearing diapers and having to be changed and cleaned like a baby.

Most important are my love and compassion for Marja. I want her to be happy and to live a full life, un-distorted by the overwhelming demands of caring for me. I’ve not been very emotional about this disease, but thinking about the pain Marja will experience brings me close to tears. I’ve seen the isolation that caregivers can experience, and I don’t want to saddle her with that. I don’t want resentment to be the last feelings she has for me.

If Marja were to die, I would be terrified of the impact that would have on my relationship with my children.

But I wonder if my pride in my independence is blinding me to deeper realities. Will Marja, in fact, experience caring for me as a burden? She’s a natural caregiver and derives great joy from sharing in the pain of others (far beyond that point where it would induce resentment in me). Isn’t it possible she will find caring for me meaningful and fulfilling? Isn’t it possible that, after fifty years of our relationship, she will find caring for me just part of our loving relationship?

Lee Ann Gerleman and others have left stories in comments to this blog in which the late stages of Alzheimer’s actually bring more joy and closeness than was possible earlier in life. There are gifts in this disease. Might not new-found joys and the different dimensions to our relationship mitigate some of the burden?

I won’t gloss over the pain, however. I still believe the caregiver gets the brunt of the pain in this disease. At some point even Marja’s capacity will wear down. We must continue to talk with each other about such feelings and allow new decisions as necessary. What is her sense of burden? Is she fearing it as much as I am? I don’t want to project my fears upon her, but I also want her to recognize her own needs. There are other ways of caring for me. We need to recognize together that I will eventually need the Alzheimer’s unit of a nursing home. Fortunately, my daughter Laurel has promised that she (Laurel) will put up a fight if Marja tries to keep me at home beyond common sense. These are important discussions.

We must plan for the future, but we must also recognize that the fear of being a burden is, like other fears, a fear of the future. To the extent that I live in the present, this fear isn’t real. The future is unknown and unpredictable. Living in the present is an antidote to fear.

My fear of being a burden is very real, but perhaps it doesn’t need to be so heavy.

An author and former physician, Dr. David Hilfiker was diagnosed in 2012 with a progressive mild cognitive impairment. His doctor thought it was Alzheimer's but additional testing proved this initial diagnosis to be wrong. Now David must learn how to come to terms with the reality of worsening cognitive issues that appear to have no cause.

Watching the Lights Go Out

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It feels very good to me to hear these comments from a man, who acknowledges and recognizes that perhaps our insistence on individualism is responsible for many people's fears of being a burden - when other cultures see increased contact and care as part of a long relationship. I learned about that valuable time of relationship when I took responsibility for my brother with brain injury. I don't regret it - and by now he is finally in an assisted living facility - but they didn't help him avoid weight gain and needs and crises increase with age - and no one wants to feel they have been "abandoned" to a nursing home to decline.

I think our fear and reliance on professionals leaves us blind to many facets of family constraints, so we assume that being put into an institution is one final act to be feared and then accepted. In real life, the increase in needs is gradual, can best be seen from close up, and a decision needs to be made, near which child, the end of life years will best be set up, assuming that continued family visits are also needed. In today's spread out world, one child is usually more involved than others, and the one who is most attuned to caregiving - often a daughter, not always - tends to see the needs and potential, and then volunteers, but does not understand the complexity of taking on a complete role - and how that will change her earning potential and savings, and her relationships with other sibs, whose lives don't change because they live so far - so they retain an illusion that care is not too time consuming.

There is no custom for arranging for some added account to save for the caregiver's lost years of working, to add to their retirement money, considering the impact if care needs go on for many years. Money needs to be set aside not just for a facility but often for care adaptations not provided by Medicare, and for travel costs for visits. Time needs to be counted for negotiating with providers - who often change during care, sometimes with negative consequences.

Elders need a younger person's involvement - maybe hire a Guardian/money manager, have a back up plan, rather than simply assume that the volunteer child will continue forever. Hire someone who knows both financial needs of the elder and caregiver, and support conversation and evolving reviews of needs.
David is right on target on some of his thoughts! But, as a Caregiver I care and provide for My Lady 100% daily and "Can not consider doing anything else"! She is now in her 11th year of alzheimers and now seems to be the final leg of Our Journey Together! She has been a catalyst in My Life as she was with her patients for 47 years! Yes, some folks think I'm being foolish by providing her care and not move her into a Care Center! My background and capability (I'm 7 years younger) dictates that I must stand by her side and one day I can rest knowing I gave her My Best! Recently, when she was taking her mid day nap, she screamed out for me to call the Police? I asked her why do I need to call the Police? Because "I'm Killing You"! I looked at her and knew she was caring this Huge Burden of guilt! I sat on the bed and said "Hey I Love cooking, cleaning house, etc., and now I get to stay around the house and care for My Lady"! She looked at me and said "but your younger then me and should be out there living your life"! I told her You are My Life and when You Smile my heart races and I know I'm doing the right thing! So, David Your Lady might be saying the same thing in her mind that I feel for My Lady! Just a "Small Smile" from you down the road of time will hopefully get her heart racing! I know she will give you a Kiss On the Cheek and give you a Bigger Smile in Return! So, remove some of that Burden and try to take one day at a time going forward! Please take care of Your Partner for now!

Hang in there from a Warrior of 11 years who will not back down--because I CARE!

Jim Dockter
Retired Senior Engineering Mgr.
Castle wrote almost everything I was thinking! Caretaking is one thing...but giving up one's life to caretake to the point where it causes severe depression and anxiety is something else! Unfortunately some people can't afford to get help for their loved ones...it's not a matter of not loving them...it's a matter of life and death for the caretaker. Would be nice if all family members would help take care of their loved ones...but after reading all these posts...it surely is NOT the case! All of us should make plans with our loved ones as to how we can help them if and when we get to a point of being incapable of taking care of ourselves! We ought NOT be selfish and expect them to take care of us to the end...unless you are one of the lucky ones that stays healthy until later in life and luckily dies of a heart attack in your sleep! lol Anway...my two cents!