Our life for 8 years has been 24/7 care for mother in law with dementia. We make it okay because we do not want his mother to feel like burden or faulted. But we feel a deep lose of self and who we are as husband and wife. And honestly it seems people understand and tell us how what we are doing is above and beyond and go on with there full lives as we continue our lives living and it all around mother law demented world. I am sad about this but we keep on doing our lives this way.
I've been thinking about your post since first reading it and wonder if we are caregivers can modify our approach to see this time in our lives as another period, another phase, albeit a more intense one.
We go through childhood, teenage years, young adulthood, marriage, raising a family, maturing, developing a career, becoming a couple, and sometimes caring for elders before or during entry into our own senior years. If we viewed this period as another phase in terms of progression through life rather than an unusual or unexpected period, would it be easier? Perhaps in years to come caregiving will in fact become a phase of life for more and more people and will become more of a mainstream activity. If we survive, we will still have the remainder of our lives to live, emerging from this period wiser and more compassionate (hopefully).
There have been times when I've had jobs that weren't the best, and it was a relief when I could move onto something else. Later, in retrospect, I realized I gained a lot from those jobs even if I couldn't realize it at the time. I began to see life experiences in a 360 degree circle - standing at one point I viewed a situation from one perspective. As time went one, I moved around the circle and viewed the perspective from a different angle.
That's what I'm trying to do with caregiving. Over the years my perspective has changed, and probably will continue to do so. Sometimes I think of what I've learned, the issues I've had to address and how it's benefited me. I'm still trying to keep that outlook so it will be a fallback perspective when times get rough.
I'm also trying to think regularly that this is something I can do for my parent that will ease his last years of life, and make us closer before we part. If I can keep that perspective, it make the tough times easier.
I do know that this sounds almost naïve and unrealistic, especially when many caregivers are dealing with dementia and difficult behaviors. For those people, there are extra challenges, and more to be proud of for having faced them head on when their loved ones have gone. They're like the Special Forces of the Caregiving Set!
Smilyn, perhaps you can view this period of time in a similar manner as well - your married life is different, both of you have changed, but think of what you're providing for your MIL. And think how rewarded you'll feel after she's gone, that you made her last years more special by your presence and care.
If you can see this as a valuable service that only YOU can perform, perhaps it might be easier to deal with the sacrifices and change in married life.
I hope this doesn't sound so naïve that it's rejected as simplistic; it's not meant to be.
Of course, my elderly parents still view me as if I was 25 years old with all that energy..... I am a senior caring for seniors. Now I got my own age decline and limitations. There are times I feel I need my own caregiver :P
Let me repeat that: Your mom-in-law may outlive one or both of you.
You and your husband (no doubt led by you) should have at least a half-day a week for date night. Pizza and a movie...breakfast and shopping...a county fair this summer...a visit with neighbors...WHATEVER. You both deserve that, and it will make you all the better caregivers.
Call some old friends or family. Hubby stays home...you go to lunch. Have a few glasses of wine, laugh yourself silly and go home and take a nap. Next time, tell hubby to do something he'd like and you hold down the fort.
You are doing Angels' work. Do not keep yourselves in h*ll. Spend MILs money for ample caregiving so that you both get your lives back.
That's the problem I have with the suggestion of treating this as just one phase in my life. I could well feel that way taking care of a spouse, or even a dear friend or my favorite sister. Someone who enriches my life even as I spend my life taking care of them. Not my mother. This is just dead time to me. A total waste of my last best years. Life is short. I won't have too many more healthy years. I want to live my life while I have it, not just wait and wait and wait for a chance to do the things I want.
I read an interesting article a while back, by an author who acknowledged what a huge sacrifice of self that caregiving entails. He said that expecting that level of sacrifice from people would be morally acceptable only in a culture that truly honors and respects that sacrifice, and where the caregiver has the assurance that the same would be done for him or her if the need arose. We don't have either of those elements in our society, and I agree with the author. Our sacrifice is not respected or honored, and rarely does anybody feel compelled to step up and provide the caregiver with the level of care she/he gave the parent. So, the "mainstreaming" idea is, to my mind, the worst possible outcome for society.
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