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.
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?
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.
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.
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.
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
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! :)
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.
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.
I was selfish. Now, it is right and good for me to do some caregiving.
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.
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.
And what works is going to be different from situation to situation.
I add, do what works for everyone involved.
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.