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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.

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Your post is very touching. I think you address an issue that affects most caregivers - that loss of part of themselves as they shift their focus to someone else.

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.
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JoAnn, I thought 80 was the magic number when health issues would start for me, and bam I was diagnosed with cancer at 65 which took me totally by surprised as there were zero markers... it was stress related. Then other health issues started to pop up. Say what? This can't be, not me. I had been a gym rat for many years, watched my weight, didn't smoke or drink... hey, not fair. So you never know what is around the next corner.

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
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This may sound harsh and selfish, but why should relatively young, healthy people sacrific their lives for relatives who have already lived happy, fulfulling lives/ They deserve to have happy, fulfilling lives, too! it does not hurt to leave the relative with a daycare or respite facility so that they can have some normalness to their lives. I don't feel that anyone should put their lives on hold for someone else that has already lived there's. I'm not saying you should dump them in the cheapest nursing home you can find and run. I'm just saying---do yourselves a favor and let someone else help with the caregiving so you can have time to enjoy your life just as they enjoyed theirs. Ok...rant over.
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BALANCE. You owe it to each other to put balance back in your lives. That takes work, planning and determination. But you must. Honestly, your mom-in-law may outlive one or both of you.

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.
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Eight years! God love you. I'm 65, husband 68. We retired planning on coming and going as we wish. First, 18 months of taking care of grandson 5 days a week. Just about 2 and daycare on the horizon. Mom falls, dementia worsens and she can't be alone. Hoping house sells and frees up her SS so I can hire people to sit with her so I can have time to myself with friends. Respite are so my husband and I can get away. I am so afraid if we don't do now one of us or both will start having or own health issues. 80 is not that far away. I feel if your health is good till then, after 80 will be when u start having health problems. Is your Mom still coherent? Or is she in her own little world.
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I cared for my in-laws for five years while they lived nearby. The more my husband and I gave of ourselves the more his parents anticipated. Dinner once a week became lunch and dinner twice a week. There came a point where our weekends revolved around them. My husband and I are a young couple. We like to hike and go camping with friends but felt his parents were old and wanted to give them joy. Fast forward to a bunch of falls and car accidents and mental decline and my inlaws were in denial that they needed more help than we could give and expected us to keep enabling them to live independently especially in NYC winters. My husband and I were depressed. His parents were depressed for different reasons. And a few times a year everyone would put on a big smile and pretend that everything was GREAT! You know those days - Thanksgiving, Mother's and Father's Day, birthdays. My inlaws now live in a great independent living facility and things are much better. It took nearly a year to get them to do it and spend money on themselves. It's expensive but when I added up their piecemeal expenses it was actually more than they're paying now. Our family structure, our communities, our society is not built to age in place. For example, my father in law should not be driving nor should most 80 year olds on the roads. The reason so many caregivers feel burdened or burned out is their parents can't age in place. It's unfortunate and yet there comes a point when caregivers have to choose between their lives - their spouses and children and careers and hobbies - and being a caregiver. Not everyone is cut out to be a caregiver to an adult who is aging. The difference between babies and parents is that babies grow up and get stronger. Parents get weaker and die. Biologically we weren't designed to have babies much past 30. So it should come as no surprise when older adults get burned out by caring for their parents. That's a really long way of saying hire help and start living your life again. Your marriage is sacred. If you neglect it you will regret it.
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I guess I'm a selfish person then, Salisbury, because I just don't want to keep sacrificing. My inlaws lived their lives until they couldn't anymore. My husband was raised by a nanny. Life isn't a dress rehearsal. I gave as much as I could. We didn't have the space to move my inlaws in with us. So we looked for a house that would fit is all ale org room to spare. My brother said my inlaws would never respect my privacy because he knew firsthand what having parents living with you did to a marriage. I have a clean conscience. I did everything until I could do no more. I'd rather be selfish and healthy than "giving" and half dead. Life is short. Tempus fugit. Carpe diem. Life is for the living.
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Salisbury, lots of money? Time to do some caregiving? Can I send you my parents? Can I have some money? Just kidding......maybe...sort of.......
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waiting4alife - I think we may be in the minority here, but I'm with you all the way. My mother retired at 58, moved down to Florida (family is in NE), spent the next 20 years traveling and going to social events and being responsible for nobody but herself. I am about to turn 62 and before I even got a chance to retire, my life was tied up taking care of her. It's been that way for 4.5 years now. And she seems to think that's perfectly all right, but it's not all right with me. I want 20 years to enjoy my own retirement without having to take care of anyone but myself, unless it's somebody I choose and I find value and meaning in taking care of them.

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.
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On the idea of caregiving for parents becoming more common and becoming a mainstream activity, I see that happening already, and it frankly horrifies me. The reason I'm horrified is that long-term caregiving robs the person not only of year of their life but often of their livelihood, their financial security, their health, their relationships, everything they value. And it also causes no end of conflict within families because nobody really wants to make that sacrifice so family members are always going to try to skate away and stick somebody else with the whole burden. And the more widespread the practice becomes, the more people will come to expect it, and will not even try to save for their old age, contain or limit their expectations, or take responsibility for preparing their own futures. My mother lives in a 55+ community where a lot of people her age have a son or daughter my age living with them to make it possible for them to continue living "independently", and she has become even more complacent even knowing how unhappy I am. I think she looks around her and thinks "Well, that's what people do. That's how old people manage. That's what grown children do for their parents." I hate the idea of people thinking it's okay to steal their children's lives from them.

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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