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A caregiver's story - II
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A Prologue
In a previous blog, I shared Adele’s story. (read her story here). Jake has been a caregiver off and on for almost thirty years. For the past year Jake has been Adele’s loving caregiver.
How long were you a family caregiver?
Jake’s entry into the caregiver role came in late 1975 when his wife became ill midway through her pregnancy with their second child. What initially appeared to be allergies turned out to be cancer and so the caregiving began. With a three year old, a newborn and a wife with Hodgkins Disease Jake continued to work full time while managing the role of parent and caregiver. While he did have help from friends and family, Jake remained the primary caregiver throughout that next year. His wife did get progressively better and they had a reprieve from her illness for several year. In 1990 she was diagnosed with breast cancer – a result of the radiation she had undergone in 1975 – just as their son was entering college. Cancer reared its ugly head again in 1998 – this time lung cancer, another bi-product of earlier life-saving radiation treatments. This time Jake lost his wife the following April.
Through his caregiving experience with his late wife, Jake learned to bring in help – to be grateful for any help and to accept and learn to manage that help. The most difficult challenge for Jake during this time was the stress of never feeling he was giving enough to any of his multiple roles. He wasn’t able to fully focus on work, his wife, his children or on himself – and he found it hard not to feel like it was a lose-lose situation during those years.
Jake found himself again in the role of caregiver when in 2002 his Dad, who was living independently, was beginning to show signs of decline. While the family met with professionals to make a decision about long term care placement for his Dad, not including him in that decision proved to be the demise of that plan. His refusal to move prompted Jake’s move from Chicago to Denver to move in to the same apartment building as his Dad and become his primary caregiver. While hospice was involved – his needs exceeded what was offered and Jake cared for his Dad for the last three months of his life.
When Adele came into Jake’s life, he knew she was in remission for an often fatal disease called amyloidosis. They quickly fell in love and despite the risks involved, he made a conscious decision to step into her life…..shortly thereafter she had a recurrence of her illness. They remain in love, he remains her caregiver and life continues to be full.
What is the most important decision you made in your role as a caregiver?
There is a common thread – in each of these caregiving experiences. Get help from any place you possibly can. Don’t be overly critical of the quality of that help. Someone brings meals – even if you don’t necessarily like what they’re bringing – if these are things that relieve you of even one responsibility – that saves you time.
Taking care of the household is secondary to the physical and emotional needs of the patient, but if you don’t have the outside help you still have to clean, and get groceries etc. – these things have to be done. Allowing someone else to do them allows you to tend to your loved one as you would like to.
Being a caregiver means always making priority decisions - if a meal has to be created, cleaned up after, laundry needs to be done – even though it can take you away from your primary role it becomes the priority of the moment. Often the chore can also become an excuse to be away from that role when perhaps you shouldn’t be.
Would you have done anything differently?
I think that when I look back on every one of these circumstances – it is just what I was referring to …I would have gone into debt or whatever was necessary to have more time with that individual even if it was just sitting and watching TV – more quality time.
The exception is with Adele – when we have to make priority choices we end up valuing that time together. I have learned to accept daily change as common. I did not accept that so well in the three illness experiences my late wife – I tried to fight it…instead of recognizing that you’re not in control and there’s nothing you can do to get in control.
Let it go….change the decisions you’re making to fit the circumstances.
Did you ask for help when you needed it?
Yes – but not soon enough, and not for myself. I would ask for help for the household but not help directly for me….I never did That is also something I would have done differently.
What was the most helpful resource you found to support you in your role?
Close family and a few friends…and then I would begin to select those people who really knew how to help without taking over and being intrusive…being in the way. The people who were most helpful were those who placed themselves somehow secondary to the couple or the relationship between the care recipient and caregiver. Some helpers don’t know how to give without also taking – or having some expectations for what they’ve done. I had to learn how to say no – set some limits to what they could do…
I began to feel like the gatekeeper….but I became a poor caregiver because I didn’t gatekeep for myself.
What did you do to take care of yourself while you were a caregiver?
I recognized the need but didn’t quite know what to do about it. With my father I had an apartment and learned to retreat to that apartment rather than be right there in his presence – which was fatiguing – set a schedule up with him so he knew when to expect me. Knew I needed to stay away every minute I could.
What did you need that you didn’t get?
What I lacked and what I didn’t seek didn’t quite know how to seek - was someone to confide in. Someone who’s shoulder I could lean on - serious leaning and confiding ….I could have picked some friends for that role, but I didn’t ask….it was my own issue I didn’t make it a priority.
Interestingly with Adele – she is that person. With my late wife I couldn’t do that with her or my children. With Adele if I have issues or fears I can talk to her, knowing that though it might upset her – it’s a safe place to take it…and she believes that as well. And it works well.
Do you think being a caregiver enhanced your relationship with your care recipient?
Yes – it’s true with all of my caregiving relationships. Significantly.
If you could share one piece of advice to a new family caregiver, what would that be?
Well in part based on what I’ve just said it would be that it’s not about self-sacrifice - and to the degree that you allow it to be that -you sacrifice yourself and the person you are trying to care for.
It is not selfish to think in terms of your own health and well-being -physical and psychological.
Do you think that because Adele has also been in the role of a caregiver, that it makes it easier to share your feelings and concerns with her?
I’m sure it helps her to be a little more understanding because she’s been there.
At this point Adele piped in from the kitchen saying: It’s been very healing to have Jake tell me honestly what is going on for him. I don’t fear it – I welcome it.
Is there anything else you would like to add?
Just that I think that the best image of a caregiver that I have is an angel. Caregivers have the ability to be as angels. Helping their care recipient - but they need to take care of themselves in that process or they will not be able to achieve the kind of loving support that they seek to provide. They may not choose the role of caregiver any more than the person receiving care chooses to be ill……but that they can choose how they give that care. And I say angels - plural – you can’t be the only one – nothing at all wrong with seeking help yourself….it can go on for years and you can’t live your life in some sort of self-sacrifice for that length of time. Not without having it cause issues for both of you - issues that needn’t be.
