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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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Carla, I think that's what I was trying to say; hub's aunt called again this morning; this time talking about how they went into debt to pay for their son's college education, not entirely sure something I'd heard before, although had been told they'd started off, at least, paying for it, but had thought that when it came debt time and they went to go into debt that the bank talked them out of it saying it would be better for him to take on his own debt as a student loan, which is what I thought they did, plus also I'd thought and she mentioned it again, that he went to work, although I thought I'd also been told that he didn't have to work during college, that they considered it hard enough work, going to engineering school, that they didn't want him to have to work, so getting a little confusing, but point is ever how much or little, apparently either not enough or expected, point being, apparently just didn't like being raised at the income level he was - do any of us? But I guess the real issue here is the fact that they are close geographically, as in right next door, but granddaughter just showed up this morning for the first time in like forever, granted, she'd now the one in college and she's working, so go figure that one, though, true enough, she's not taking engineering. Big sister just graduated, started first full-time job but they both still live at home, hence still right next door, comes some but not much. Still a younger one who's an older teen-ager, still in high school but of course not this summer. And the oldest one's married with a new baby.

Guess the point is she keeps bringing up the sacrifices they made for their children and them still not wanting to return the favor. I can understand in your situation - not sure what's going to happen in this situation but have a friend who's grandmother did the same thing, I think, when she retired, although I do think she does have children where she moved, who actually may have moved first, just that this daughter and grandchildren didn't and haven't been part of her life but who tried to make plans to go see her and she acted totally noninterested, so, yes, hope she doesn't expect anything out of them.

But with aunt, that's exactly what she called herself at least, endeavoring to do, and in my mind, at least, she did give them reasons to be grateful and they say they are but....it is true that uncle was forced out of his job before he was actually old enough to retire, or at least to draw SS, but then so were others and they found other jobs; maybe that's what they think he should have done, instead of just working for his nephew doing construction, apparently no longer paying into SS, although their retirement would be ok if.....no inheritance, if anything they helped take care of their parents, again, thinking it would be returned but the reason they don't have the money to pay help, at least the last thing, is the money they gave their grandson, although not sure how much they'd already given some, if not all, their granddaughters who all belong to the son while the grandson belongs to their daughter. But they also thought that he would help them as well. The move is a whole other issue; she's saying now that he wouldn't even be able to make a move. Although she's talked about them moving to assisted living. Maybe granddaughter at least brought batteries for their smoke alarms. She says she's not even able to go get them herself anymore, or at least not right now. Though I did think the fire department would do that.
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My therapist says, in this situation you do not do what is "right," you do what works.

And what works is going to be different from situation to situation.

I add, do what works for everyone involved.
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debdaughter- I appreciate what you've said and I've been thinking about it since I first read it.

I think the idea of family taking care of family is ideal, if the family members are close emotionally and geographically. Unfortunately, that's often not the case, and is becoming less and less often the case (at least the geographical part). What we have now is family members scattered all over the country or the globe, who have established lives wherever they've landed. So the family doesn't come together to care for the elders - it's generally one person who has to sacrifice the life they've established (or are trying to establish) to take in the parent or move to the parent's location. Help from the rest of the family is often difficult to impossible to obtain. So it creates a lot of strain and hardship on the one and a lot of hard feelings all around.

If the parent has been sacrificing for the children and grandchildren all their life, it makes sense that you'd want to return the favor and care for them in their time of need. However, that's often not the case. In my family, my mother was the first to move away. She established a new life in retirement and her kids and grandkids really weren't part of it. Twenty years later, when she starts needing help, we're yanked back into her life and expected to take responsibility for her. But she's practically a stranger now, and most of my siblings are still living up north with their own families, and nobody feels inclined to make a big move or a big sacrifice. I stepped in to help because I was divorced, no kids, and my job was portable. But I didn't expect to be putting my life on hold for this long. I thought she'd live 2-3 years maybe. Now it's 4.5 years with no end in sight. This is way more than I wanted to do, but of course the more you do for them, the more they expect, and the more they dependent they become.

What do I think my own mother should have done differently? A few things. First is to invest in relationships with family so they're not strangers by the time it comes to needing help. Stay close to them and give them reasons to be grateful. Second, I wish she had worked a few more years (she retired at 58 to enjoy herself) or saved money from her inheritance so that she wouldn't have to rely on unpaid help for home maintenance, transportation, housework, etc. Because unpaid help requires that someone's life (mine) be tied up indefinitely tending to issues that a total stranger could do just as well. The third thing elders need to do, I think, is to reduce their expectations. Be willing to move to a small apartment if that's all you can afford or manage. Be willing to move to assisted living if you need to. Don't expect your grown children to maintain your standard of living where it was when you were able to take care of it yourself. That's taking up too much of somebody else's life. IMHO.
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CarlaCB,

For the record, after my Dad retired, my parents spent twenty years enjoying winters in Florida. They spent four months every winter. So, A) I really do get your point. B) I remind my mom of this when she is angry that I took a long weekend.
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Carla, had just that conversation with hub's aunt just this morning; she helped take care of her grandparents and then her parents and she just thought when the time came her children would take care of her and uncle; we somewhat decided that part of the issue is that back in the day those grandparents and parents hardly, in that sense, ever took care of themselves; they didn't drive so always depended on someone else to take them wherever they needed to go, as in their children/grandchildren, so, in that sense, that's when it was mainstream, so then as those children/grandchildren grew up, became parents and grandparents their children and grandchildren didn't seem them the same way they'd seen theirs because they'd always been able to take care, then, of not only themselves, but then somewhat because that they saw them as someone to go to take care of them when they not only needed but just wanted something, which, because, they'd had it hard growing up themselves from their parents and grandparents having it so hard they didn't want their children and grandchildren to have it that hard they were only too willing to do whatever they wanted them to, give them whatever they wanted from them, with still the idea that when their time came they would then in turn do for them, not only what they'd done for them but what they had done for their parents and grandparents, not realizing that they had not overtly instilled that into their children and grandchildren, but just assumed/expected that they would see it that way because of what they'd done and seen them do, while, instead, it seems that possibly they actually resented what their parents had done for theirs instead of doing and/or at least spending time and money on them as children, so therefore intending that that was where they were going to put their resources, into their own children, rather than taking care of their parents, maybe possibly without even being able to grasp that they even need taking care of or maybe grasping but just being willing to make that sacrifice because of what they saw that of their parents they felt did to them, feeling as if they'd had to already made that sacrifice then and they weren't going to do it again. It is true these people practically took all their savings, at least for their children and grandchildren, not thinking about what that might do to their own futures, or, like said, expecting then that they would in turn take care of them because of it. But is it actually stealing from them when they're the ones who made it possible for them to have the lives they have? How would it have all worked otherwise had they not done it? Are the children honoring the sacrifice the parents made to enable them to have the life they have? Or should the parents not have thought that in doing so, and in having taken care of their own parents and grandparents, they would have the assurance that they would be taken care of? so what should have been done then?
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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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I do agree with you but--IN MY PARTICULAR CASE--I had quite a cushy job and really enjoyed my career years. Traveled, didn't work too hard, money was ok. Then I added a business of my own. Excting, more travel, lots of money. No time for anyone...

I was selfish. Now, it is right and good for me to do some caregiving.
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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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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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My husband and I are both 49. His father, who is 92, has lived with us since September. Our adult daughter is married and my husband is an only child. We both have full-time jobs and have paid caregivers in our home Monday-Friday while we working during the day. The rest of the time, it's us taking care of him. We very rarely go anywhere together anymore and I am really looking forward to the day we can take a vacation together. We are blessed to have good paid caregivers and even a volunteer from church who sits with him one day a week. Our daughter and son-in-law are good about coming home to be with him if we need to go somewhere. We will not leave him with them overnight however. We just keep saying 'this is the season we're in.' His dad has prostate cancer, dementia and a permanent catheter. We have no desire to put him in a nursing home and he does not want to go there either. As long as we can take care of him at home, we will. We both get away for 40 hours a week while we work then we take turns running errands or doing whatever we need/like to do. We view ourselves as a team so when one is more run down (like the times dad decides 2 a.m. is an appropriate time to wake up) the other one takes over. Our marriage has actually gotten stronger through this time but we make a sincere effort to work together. This season too shall pass!
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Veterans Administration. Dad was a WWII vet. Seeking help from them for my 96 year old Mama.
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Amen...
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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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Oh, I don't think you are selfish.I had a real selfish thing going on--but you have been giving and giving!!!!!!!!!!!!!!!!!! Yes, you deserve a rest and a life!
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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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Wow, can I identify with this. Not because of care for my mother, but because my husband is failing. Our previous life is all but gone because of :

Hearing loss: our conversations are so difficult!!!!! It is hard to be believed.

Mental impairment: my husband's processing is not "off" but so slow that my mind wanders before he responds to a question. His speech is so slow that my mind wanders before he finishes a sentence. It makes "conversation" as we knew it all but impossible.

Physical lameness/slowness: We used to sail and sailed a boat to the Chesapeake from Puerto Rico. We sailed to Key West and Nassau. We walked and hiked a lot. Forget about anything like that. At this point, my husband does not drive and has not made the decision!!! His driving is freaking scary!!!! I simply announced that from now on, if we were both in the car, I would drive. And I make sure that i am always in the car. That means that I cannot ask him to go get anything. I didn't find this a problem--but if I get sick???? I cannot say a word about it. I just have to soldier on.

Having acknowledged all of these changes, dramatic changes to our lifestyle, I fully agree with GardenArtist. This is a phase, I call it a chapter, of my life. This is a giving chapter and I am grateful for it. I have been a selfish person. I had a career and a small business. It was all about me. Now, it is time to be unselfish. And I can really feel myself changing inside. I am becoming more empathetic. More genuinely caring. Less selfish.

Do I sometimes wonder what will become of ME? Yes. But that doesn't change the fact that, most of the time, I can regard this as an important piece of my life that makes me, at the very least, more understanding about what others have to contend with. Furthermore, I do understand that this is not forever. I could lose my husband today or tomorrow or in ten years. So, carpe diem. And memento mori.
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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 wish I had some advice to give but we are in your same situation trying to find the balance. We have been caregivers for over 5 yrs now for both of my husbands parents, sadly my fil passed almost 3 yrs ago, and our attention now is with my 88 yr old mil who is determined to live on her own. Both of my husbands brothers live out of state and only one of them has visited mom twice for the weekend for health crisis reasons in the 2 yrs. If I would of been able to see the future back then and know how his brothers roles in moms life would change I'm not sure we would of agreed to her moving. My husbands resents them both now and is very disappointed in how they both have left it all on our shoulders. We have no life outside of caring for mom, and when we have tried to plan a get away a crisis of some sorts has made us have to cancel. We have not had a real vacation in over 6 yrs outside of traveling to his parents house out of state before her move to our town. Meanwhile they have time to have get togethers at each others houses and travel and have hobbies and outings/dinners with longtime friends. It's aggravating to say the least and hurtful, but my husband is the peacekeeper and doesn't want to stir the pot and have mom get upset by starting a tift. If it wasn't for the caregivers coming 2× a day for 2 hrs I think we would of collapsed already.

Our only me time for us is when we are home, but when we get home we both drop in our chairs and say we made it and high five. Finding time as a couple after giving everything you have to a loved one in need is emotionally draining to say the least. Trying to find a spark again to get that fire back in your love life has become something neither of us has
had any desire to do for a long, long time. We still love each other and say it often, but that easy playfulness or
touch is none existent, the STRESS has taken it all away. We are best friends and room mates that sleep in the same bed.
Yes I'm sad, as I am sure my husband is also that we don't have a
sex life, but we are still relatively young myself almost faa-faa-fifty 50,
ok I said it...lol, and him 58.
I'm hopeful once this stage of life is done we will go on that romantic vacation and it will all come back again. Sizzle, sparks, fire!


My take on life has always been Smile, it will brighten someones day, Laughter is the best medicine and I always feel better when I do, and Love as much as you can today, because tomorrow is no guarantee.
Peace, and Health to everyone! :)
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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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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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there is nooooo way you will ever feel better if you don't find some time off...and I mean ... at least a couple of days off...and even then...after years of caring for your loved one...you will feel like you're losing your life and your mind!! Wish I had something positive to say...but dam...who's kidding who when people say you are doing something wonderful for someone else!!
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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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Can you plan to have people over? Can you plan to go for coffee, for even an hour? You do need your own life.

What are the plans for her, if one or both of you die suddenly? I would think that a respite, in wherever she will be placed would help all of you.
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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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You may want to check to see if there are any day programs that your mother in law could partake in. Good Luck to you and your husband, and many prayers to you all.
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Can you afford to hire help or put her in a nice facility?
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Gosh, it sounds like you need some changes if you can manage it.

Is there any chance you can hire someone for a few hours each week so you can get away for a bit? Or is she capable of going to a "day out" group for dementia patients? Maybe check with your local agency on aging group and see if there is anything like this in your area?
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