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Elizabeth Blackwell's study on the cellular impact of stress (She's at the University of California San Diego I think) shows it's not the stress of caregiving per se but how a caregiver views the demands causes the harm.
Sharing how you keep yourself motivated could unlock the door to a better life for others on this board.
You share a wonderful thought when you comment about the importance of listening and understanding our loved ones needs. To do otherwise is self-centered and selfish. Sometimes in a morbid way.
Some caregiving situation are so severe you will reach the point where providing the hands on care is too much to bear.
Making the decision to call in hired hands is not a sign of weakness or failure. Too often it's viewed that way. Typically, it's precisely the right step. Inevitably, it's taken way later than it should be.
You can only do as much as you can do.There is no law that says you must sacrifice yourself to prove your compassion.
The key as you so eloquently point out actively listening to the person we care for and help them live the best life they can under the circumstances. You've brought great wisdom to this exchange.
Martin
You are doing the best you can, no one can ask more. Hopefully by you setting such a great example, your sis will realize her way is selfish and hurtful But don't hold your breath. I had a sister-in-law you kept telling me that she knew better than I what my late husband needed when he was slowly ( tho not painfully) dying of lymphoma. My sanity was saved by my minister and by our doctor who totally understood the situation and was supportive of me as the weeks went by.
I tried to maintain my cool and eventually s-i-l ( who thought she knew better than I because she had been a nurse long ago) stopped calling and went on to "advise" one of her neighbors.
Keep chatting with all of us here and venting, if need be, about your situation.
By the way, "sunshine" can anyone join your caregiver's support online group?
Sounds as if it would be helpful.
Beachwalker
The reality in all of this to me is that there comes a time when, if seeing what we are seeing and/or experiencing what we are experiencing in providing our tender loving care becomes too much for us to bear as individuals, whether in our hearts or our daily comings and goings, or in our dealings with our loved onesand other relatives, then we may be at that fork in the road where we need to accept that we have done all that we can and run to seek help from those who are paid to provide long-term care to others. Caregiving is incredibly complicated as everyone's posts establish. About a year ago, I started a small caregivers support group online and it helps to be able to share our thoughts and feelings on the common feelings and situations we share, just as I also do on this website. May God bless you, marmmy, blondie, and all of my fellow caregivers. Our journey is not for the fainthearted.
my dad went to the doctor yesterday, finally. He said we need to get the lifeline for him. My dad said no because when he goes he just wants to go. To make matters worse my sister is causing major problems and putting so much strain on the family. I ended up changing all my screen names and will have no contact with her at all. All she wants is what she thinks is OWED to her from Mom and Dad. She wants to know all about their finances and I told her they would tell her if they wanted to. I have to deal with this besides all the pain my father is going through.
Jessie
Blessings,
Carol
My thought for you are to be watchful and listen as much as you can without becoming exhausted yourself. Know that all rivers flow to the sea eventually ( that's how my Mother's minister phrased it and she loved that notion). Be peaceful and calm and hug those babies and little ones who affirm life just by romping around, and stroke the hands and lotion the feet of those who no longer romp.
We all just "carry on"... Beachwalker
Carol
from what see you care about her a lot.
You're fortunate to have a mother-in-law you truly care about.
Most are not so lucky.
You asked for motivation and state you "are getting to a point you don't want to go". Watching someone die is very difficult. No one can blame you for
not wanting to go to witness it.
You've received some excellent responses to you post. As Carol points
out dying is part of life. American's have become insulated from it. Modern medicine has learned how to defeat and manage so many diseases it's easy to
view is a miraculously mender.
It's not.
It can only do so much. And so can you.
Visit with the chaplain. If you haven't done so already visit with hospice as well. It's a remarkable service that can make you life and the final days of your
mother-in-law as comfortable as possible
I wish you the very best.
My mother wanted to go long before her body allowed it. She'd even say, "Can't you just give me a little black pill, so this will be over?" I would have to tell her that we'll do all we can to make her comfortable. But I never told her "not to talk that way." That was how she felt. I tried to bring her everything she needed and worked with staff to manage her pain, but she was never truly in a good place until she was ready for hospice. Then things improved for her, as her pain was managed better. But she was still ready to go (by then my dad had died, and I believe she wanted to follow."
We all need to realize that death is part of the life cycle. Our society struggles so to deny that fact. Sometimes people have lived a full life and are ready to move on. This can be especially true for those who believe in a spiritual life after the physical life has ended. We need to do everything we can to make their physical life worth living, but they have a right to their thoughts, as well.
No guilt need be felt by the caregiver, if this is where the situation happens to be. If there is potential for quality of life and the person is depressed, obviously medical intervention and an antidepressant could be in order. I'm talking about someone whose quality of life is very poor and there's no medical way to make it better.
Carol
I know I will be in your position someday and I have thought of this many times. I know this may sound mean but if that was my fathers wish i think i would let him go. He was always a strong, proud, independent man. Now he just sits all day and is afraid to go out because he doesn't want to fall. He has lost all independance. He can not drive or go anywhere by himself. My mother and he have been married over 55 years and they are still very much in love as I hear them tell each other all the time. As I said I would respect my Dads wishes and grieve in private while being there for him.
You've got a big heart and are making the best of a tough situation. Please try to take care of yourself, and know we'll be here to listen.
Carol
For your own sake, you may have to sell the house and move them into assisted living or something. You can only take so much. Bless the brother who supports you. Keep coming back here. We can't change it for you, but we can listen.
Carol
You and your mother would do better by telling him you won't be treated like that, and walking away (easier for you than your mother - maybe she could have an open invitation to go to your house?).
His pain, physical and mental, is making his life seem not worth living. If the pain and depression were controlled, he may feel differently. Is there a spritual leader or a good friend who could talk him into seeing a doctor?
The guilt isn't yours or your mother's, if he won't go and just withers away. If he doesn't eat and doesn't drink fluids, his body will eventually start shutting down. He must be getting enough to keep living, if only marginally so.
Since he is nice to others, that also shows some control over his behavior (many with dementia are wonderful to their "guests" and even to doctors, and then the caregivers are judged as being "bad." That's very common). So, dementia of some type is still possible, even with some control over how he behaves. If he thinks you and your mother will stop being his whipping posts, he may shape up for a little while. The whole thing would have to be repeated as old habits die hard.
If you can find someone outside the family to talk with him and get him medical help, that would be ideal. He won't likely listen to you or your mother. That way he has someone to blame.
Blessings to you. You are trying to help them. Some people just won't be helped. You could try a welfare check - having the social services people come and evaluate him, or even the Alzheimer's Assosciation in your area, but he may not allow that, and if your mother covers for him (a habit), they won't get a true picture, anyway. He'll act charming, the house will be fine, and they may not be able to do anything.
Again, I encourage you to try a trusted (by him) friend or professional. That's probably your best hope.
Carol
I don't have enough information about her history to be too helpful, but these are some thoughts from my experience:
If your mother-in-law can be encouraged to eat and drink, she may get stronger. However, she may be doing as she wishes. Do you know what her wishes have been all along? Before she got sick? Did she want life-saving measures taken if she was in this condition, at this age? That's a huge help for the caregiver. That is why we all need to make out a living will or better yet, a health directive, and give it to our families and to our health providers.
It sounds like you don't have this. Think back on conversations you've had with her through the years. What has she said about friends or relatives when they've reached similar situations? Try hard to think what she would want and abide by that. If she would want life-saving measures, and coaching and encouraging her to eat and drink don't work, you will want to tell the doctor that.
If she would have wanted to go "when she was ready," she will not be uncomfortable as her body shuts down. That is natural for the body. If the organs can't do their work, food and even water can be negative and prolong her dying process. Keeping her mouth moist with swabs and a few ice chips if she seems to like that, can be helpful. Just talking with hospice at this time could help you greatly. They will understand what is happening to her.
Blessings to you in this difficult time. It's horribly hard to watch them slip away. But the final moments can be beautiful, especially if you know she is "going home" and that is her choice. I encourage you to talk with hospice right away. Their chaplain could help you a lot right now, and their medical knowledge will help you make the right decision.
Carol