I recently heard about a couple situation in which one partner had been the designated ill person for many years. She has a degenerative illness which often requires complete rest and occasional hospitalization. She has already outlived doctors' predictions of her life span.
The couple had adjusted well to the needs this illness imposed on their relationship. They took advantage of her well times to socialize, go to movies, and go for long walks. The more symptomatic times meant the well partner did the chores, and they spent their together time reading or sleeping.
Unexpectedly the well partner was diagnosed with breast cancer. They believe they caught it in its early stages and have high hopes for treatment.
However, this new illness has dramatically shifted their equilibrium as a couple. They were used to one person's limitations dictating the flow of roles and responsibilities. This second illness, in the partner who was supposed to go on being the healthy one, has changed the rules.
How can they now prepare meals, shop for essentials, take their child to school, and generate an income while dealing with the double whammy of two illnesses, each bringing its own set of limitations. They are struggling to adjust.
How many of you are part of a dual-illness couple -- where both people have needs for caretaking? How do you manage this challenge?
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12 comments:
This is a really scary idea for me, not only because I need help but because I can't help a lot in return. Fortunately my husband's only been sick for brief times. I guess we'd adjust with chronic or serious conditions but that's doubly difficult for people.
my wife and i both have chronic lyme disease. i was diagnosed first and have a more severe case and later she was diagnosed. we are both in treatment now. it's very diffcult.
We had to face this exact circumstance a couple of years ago. I am the disabled partner, and my husband is a loving and patient caregiver. Suddenly, he was struck with several health issues at once, that required him to be hospitalized for an entire month. We had to scramble to find other resources, and rely on extended family to help out until we could find other solutions. Some of the problems were never solved, and if he had not recovered when he did, I don't know what I would have done. It was terrifying, and humiliating. I don't think I've ever been so 'knocked off my perch', and I pray to God it never happens again. The problem is that if it were to happen again, I can't think of how we'd be able to deal with it any differently. The services that I require are just not available - and we're in a major city! Anyone else been through this, or have any suggestions?
Frida, Carey, Brenda - thanks for sharing your experiences. It is indeed frightening when the person you're counting on for help gets ill and not only can no longer help you, but needs help for him/herself.
Hopefully extended family and community services are available. I have often found that hospital social workers or discharge people and family service agencies know a lot about resources and aid.
That is without a doubt, my greatest fear. I rely on my husband for so much with my disability/chronic health issues. I pray regularly that he remains healthy as I just don't know how we would manage if we were both in this state. I have such deep empathy for those in such a situation.
That's a very scary thought. Honestly, I think we'd just ask our family and church family to come over and help out if we were both sick.
Lost Butterfly, Ashley - I share your fear. I think I need to express my appreciation to my partner more often and ask him how he's doing.
I am the "sick" one, but my husband has untreated (he has no health ins)depression, ADHD, SAD, and we have a son with ADHD who has recently begun to have problems with anxiety. We have no help and it is so hard! I don't think our families understand, maybe because my health problems are invisible?
Barbara:
You mention how the equilibrium shifts when the well partner gets sick. That's what chronic illness or disability in one of the partners does: it creates an imbalance in the relationship. Every time changes happen it takes a lot of work and adjustments for both partners to restore a new balance. I'm the President of the Well Spouse Association, and the WSA is a peer to peer emotional support group for spousal caregivers.
My husband had polio as a child and has significant issues related to that (most significant being SEVERE scoliosis (more than 110ยบ curvature for his worse curve. Also has kyphosis and a weight of 98 lbs)
I married him ..and I was healthy. 2 years into the marriage I became very ill with Myasthenia Gravis and Lupus (MG took 2.5 years for dxl, lupus +10)
It's an interesting balance with who is more unhealthy at any given point ... but the worst fear is both of us being 'down' at the same time!
People ask my partner of 30 years and I how we "do" it, all the time. Well, we just give whatever we have to the other whenever we can, it has always been just us, no family to help, now we are in assisted living, 6 months, we keep hoping one or both of us will get better...but at age 52, tick tock tick tock---we think outside the box, survive in ways we never dreamed at 21 that we would ever have to...destiny put us together, and we accept that there is always a way to love and happy...but there have been many dark days and many tears and still many fears. People often say, "At least you have each other," as if that makes life better, when it doubles the problems instead.
For many years I have lived with a husband with chronic pain, due to injuries to his back, several surgeries that didn't 'fix' him and it's been a struggle, especially emotionally. Fortunately, through my job I have health insurance and a good salary, and we have been able to survive. Now, I have been thrown a curve ball, have an injury that causes chronic pain, hasn't been diagnosed, nor have I gotten a plan on how to fix or live without an income or insurance. Do any of you have a similar issue? I am trying to get time-loss, the injury happened at work, but am being fought the whole way. Please, any suggestions would be helpful.
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