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I understand your husband's perspective, but this really is his mom, and she deserves the best care she can have at this point in her life. It sounds like that might now involve 24/7 supervision. It is unrealistic to expect to be able to provide this in your home without help. I suggest that you either bring in some in-home help (does she qualify for hospice?) or you place her where she can be cared for by trained professionals working in shifts. You say you don't have the heart to put her in a nursing home. Even if nursing home care is what she needs now? Would you say that you don't have the heart to see that she gets the best care? Placement is NOT THE SAME AS ABANDONMENT! Visiting her frequently would give you a chance to relate to her as a loving daughter-in-law and son, rather than as burned out 24-hour caregiver. I'm mostly thinking of what would be best for your MIL, but this arrangement would probably be best for you, too.
Until her angel is ready to take her, I hope you can come up with ways to see that she is not left alone, without giving up you necessary walks, and without aging another 10 years!
When my mother lived with us, I was on 24 hour watch because she could not be left alone for a minute. The most I slept in any 24 hour period was 2-3 hours. I was exhausted and at my wits end before she died. You love that person with all your heart and soul, but your heart and world are ripped into a million pieces caring for this shell that was once the vibrant person you used to know. You want to give them the very best quality of life possible; while you watch your life going down the drain. It isn't fair and you find yourself wishing it would all just plain end. Then you feel the guilt for having those wishes. You don't really mean it, but you are just so sick and tired of what your life has become and you don't see any way out in the near future.
Putting our parents into nursing homes is something we just can’t bring ourselves to do. Yet, I keep asking myself when is it going to be our turn to have a life? We are in our 60’s and have spent our “Golden Years” caring for parents, who, at our age, were living the good life free to travel, play golf, winter down south, visit grandchildren and enjoying their retirement. We missed ours caring for them, yet I am not sure I could put them into a nursing home either. One time we went into one and my father-in-law sadly looked around at the people in wheelchairs with blank stares and said, “This is what happens to the throw away society.” So, we care for them in our home.
Is it worth it? I honestly don’t know. Selfishly, it is the hardest, worst experience I have ever been through, yet when the nurses and doctors kept telling me my heath was being ruined and I needed to put my mother in a home, my only response was. “I can’t do that to her”. I felt she was more important than whatever I had to endure for her. Most of all, I would have missed sharing some extremely precious and treasured moments had she not been with me. Like the occasional times she would pop back from her other world, take my hands in hers, hold them to her face and kiss them, telling me how much she loved me. Then she would slip away again. Those were moments I may not have had if she were anywhere else. I cherish moments like those today and they continue to bring tears of love, sadness, joy and missing such a precious person.
However, having said that, on this side of the equation, maybe I should have listened to the doctors and not had her with us. Would the activities of another environment been more stimulating for her, would our times together been more meaningful, would they have given her better care, would she have been happier and healthier over all? Either way, the guilt consumes you. I did my very best, but to this day feel guilty for not being able to do more. Did I let her down in some areas, could I have been better and more dedicated? And then there are the ugly thoughts that you never want to admit to allowing yourself to have. Like wishing it would all just end so you could have your life back. When I was away trying to catch two minutes rest, my mind would revert to the person she used to be and I would be overcome with guilt, I still am today. However, all the times I would have to run down two flights of stairs because she stirred (we had a monitor in her room so I knew if she was sleeping and just rolling over or if I had to run to help her) and I would be faced with the monumental challenges of who she had become I would understand my ugly feelings. I kept telling myself to remember and realize who the woman before me was, what she was like and that this is what my mother said all her life she didn’t want to be. Why were we kept in this state of digressing, limbo hell? There was no way up and out, only down and down would we continue to spiral into this God forsaken pit. I wanted it to all go away so we could be happy and normal again.
Whoever wants to become like we see so many parents today? We keep their bodies alive while the brain slowly dies. It is tragic for everyone involved. I have come to believe it may be better to allow people to die when they should and not do the heroics just to be left with a shell that drains everyone emotional, physically and financially. I brought my mother back from the brink of death three times. Sadly, through the following months and year, there was more than once I questioned the intelligence of those decisions, not only for myself, but more to the point, for her. In reality, what quality of life was she having? Sure there were times she knew what was going on, but two seconds later, those memories were long gone and forgotten.
I have to admit, like I said, I found myself wishing my mother’s time on this earth would be allowed to come to an end. She was the sweetest person on the face of the planet, yet I watched her mind torture her, telling her to do and feel things that were only imaginary, yet so real to her. There was no getting through what the brain was doing and at times it was ugly. I felt so sorry for her and knew it was only going to get worse and prayed God would take her from this awful state her mind had her trapped in. I hated myself for feeling this way and I still hate myself for having those thoughts today, but why do we all have to be put through the torture of watching our loved ones endure this kind of hell on earth? What quality of life do they have? NONE!!!
And look what it is doing to so many families. Their lives and health go right down the drain. My mother scrimped and saved a lifetime to be able to leave a small inheritance to her grandchildren. If I placed her in assisted living or a nursing home, they would soon take every penny. If I placed her on Medicaid, her finances would all be taken away by the government and what she worked and gave up for so many years to leave for her family would be gone and she wouldn’t want that either. I was between a rock and a hard place and felt it didn’t matter what I had to give up, I was going to honor my mother for the beautiful woman she was and do my very best to preserve that which she wanted to leave for her grandchildren. I did that, but at a tremendous cost to my life. And now we are also honoring my father-in-law so he doesn’t have to go “Where they throw away society”.
Was / is it worth it? Who truly knows? In an idealistic world, we would all live happy, productive lives enjoying our family and friends until out last second on this planet. But, in reality, that isn’t even close to what happens to so many of us. We each have to do what is best for our individual situation and live with the good and bad of each decision. I have loved each parent with every fiber of my being and did / am doing all I can to preserve their happiness. But, is it worth the feelings of wishing it would all end so each of us can finally find peace from these tortures? I guess it must be or I wouldn’t do it. Yet, there does come a point where the burden is way too heavy to bear any longer and it is time to save yourself, mentally, physically and however financially possible.
Bbrady, you didn’t say much about your situation. Can you apply for Medicaid and place your loved one in some sort of facility so you can have some peace, even for a short time? We have a program here called PACE, it is similarly financed as Medicare for nursing homes, with the exception the person is only at the facility during the day. You have to spend down until you lose all the savings, etc. and qualify for Medicaid. It isn’t a 24 hour a day, full-time placement, they go in every morning and come home to be with you through the evening and night. That might be an option for you so your days are free to work, sleep, play and call your soul your own. If you are married and worried about losing everything, I know some people have divorced to preserve some of the income. Don’t know legalities and I STRONGLY suggest seeing an estate planning attorney for guidance in ALL these matters as they are extremely complicated and change with the wind. Or if your loved one qualifies for Hospice, they are a tremendous source of help. When I finally consented to having Hospice for my mother, I found it the BEST decision of my life and sanity. Our Hospice gave us 16 glorious hours a week of respite care and it kept me from being committed. They also had a Hospice house I could utilize if I needed 24 hour care for some reason………..like the birth or our grandson which I would have missed without them.
Sorry I have rambled on so long, but I know exactly how you feel and how trapped you are on all sides. There isn’t a feeling I didn’t have and still face today. DON’T beat yourself up about it, you are completely justified in those feelings. You are losing so much, giving up so much, working so hard, for what? They are only going to slowly get worse and worse, taking you with them and, sadly, the only peace and rest for any of us is their death. Not knowing how much and how many years both of you going to have to suffer before that time comes is the worst part.
However, it will come. I just hope what you may have lost in health and finances aren’t beyond repair, because there isn’t a caregiver out there who hasn’t lost either large or small on both counts. However, most importantly and above all else, remember the day will come when you will yearn to give that person just one more hug, looking into their eyes, saying how much you love them to their beautiful face. If only I could give my mother just one more hug, see her smile and be able for us to tell one another “I love you.” ~ just one more time. As seemingly as impossible as it might be for you right now, try to remember this will all end someday and you won’t be able to feel those precious hugs of I love you ever again.
I know this probably didn’t help much because you are still in the middle of a horrible situation neither you nor your loved one asked for. I know, when I heard or still hear words like these from others, even though I know in my mind they are right, in my exhaustion, it’s hard to relate. When we are cleaning up after my father-in-law today and I watch many of my beautiful things being peed on and ruined, when we take him to the ER and doctors offices for the bazillionth time because he won’t do what he is supposed to do, it is still difficult and I still wonder why God is so cruel to all of us.
The one thing in my life I NEVER wanted to do was care for the elderly and so far that is what I have done for the past 10 years, and it isn’t over yet. So, bbrady, allow yourself to feel, even the crappy stuff, it is all part of the equation. Do what you can to get away for a few moments peace. And talk to an attorney, social worker, senior services and everyone in your community who might be able to lend a hand and offer support. It might not be a lot, but every second counts sometimes. It is then I have to remind myself to go get just one more hug.
I wish you the very best and send you tons of hugs and empathetic understanding.
all the love to you ...
Try not to judge yourself. Good luck.
I am not trying to be negative here. Just realistic. It is not comforting to here, "there, there, things will get better," when the reality is that things will get worse. What can get better is our coping skills, our self-acceptance, and our reslience. The specific incidents that cause us frustration may be over quickly. But they also may recurr over and over. Getting away into another room or outdoors is good, practical advice. When we are calmer we can generally handle things better. But the things themselves might not get better, and that, I think, is at the heart of our frustrations.
Get a good night's rest, and start over in the morning. Do your best. Get help when you need it.
A caregivers' support group can be a great source of support and encouragement.