I've been my mother's family caregiver for seven years and have watched her go from moderate cognitive impairment to very advanced dementia. She's lived in three different facilities and I go to see her once or twice a week. I've also handled all her bills, medical appointments, taxes, ordering medications, buying diapers, everything. My brothers live across the country and usually visit once a year for a couple of days. I'm spent. The visits with my mom have gotten more and more difficult. She usually recognizes me but she's barely a shell of the vivacious and intelligent woman she used to be. She can't put more than a few words together and sometimes she just moans, like she's aching to get out of this life. I get so depressed when I see her. I try to hold her (she's very affectionate), play music she likes, take her outside, bring her treats to eat. What else can I do? And how can I keep from getting bummed out every time I see her?
(As I look through the topics it's hard to know whether to list this under Caregiver Burnout, Depression, Activities & Recreation or Life as a Caregiver! I'm dealing with all those things!)
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As previously mentioned, shorter visits are okay. Give her affection, touch and the sound of your voice. Bring a treat if she still likes some special foods. She can't show her appreciation and you see her slowly drifting away - that's the ugly nature of the disease.
Acceptance is key. This is not how you want things but it is how it is for now. You can't change that. You are in constant grief and need to give yourself days off and respect for all that you do. If you have a spiritual leader you may get some comfort there or even from a paid counselor who will encourage you to take care of yourself.
Please keep in touch with us because people here understand. They know what you are feeling and how very, very hard it is. No guilt allowed about how you feel - okay? You are doing just the right things. Just do less when you need to.
We're with you,
Carol
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5 - 10 minutes a day is easier than an extended weekly visit for both of us i think .
Keep posting on here, that's what AC is all about.
Hugs..
Take comfort: you're doing the right thing by still going. Your mother's awareness of it may have dwindled sadly, and will continue to deteriorate, but whether you see it or not your love is really important.
You are not just allowed, you're supposed to be sad. Seeing your lovely mother attacked like this is a wretched experience. Often when something is horrible we 'can't bear to look'; but for as long as she lives, your being there helps her - so that's why it's worth doing. That's your motivation, and all sentimentality aside it is a noble one. Take pride in it even if you cannot take any pleasure.
You are living through one of life's most insidious diseases and my heart breaks for you. I lost my mother 4 years ago and I still beat myself up with the I wish I had syndrome. In our home, we cared for three of our parents until their final days. All had Alzheimer’s and accompanying health issues that were very unpleasant and difficult. One thing I found worked wonderfully, until my mother was beyond comprehending, was playing Bananagrams. She could play at her own pace while my mind was still stimulated. That is often very tricky when you find yourself repeating and answering the same questions every two minutes. I actually timed it once and my mother asked me the same question 12 times in 15 minutes. We did all the towel folding, family picture reviewing, going for rides and getting an ice cream cone and everything I could find to keep her feeling valuable and both of us stimulated. You start feeling brain drained and question your own sanity and thought processes after just so long too.
From you last statement about what topic to list your inquiry, I have the feeling you are struggling and hurting. You sound like a beautiful, loving and caring daughter. Your mother, although she may no longer have the capacity to let you know, I am certain feels and appreciates your devotion and love. Be gentle with yourself as well as your mother. Often the only thing left they can understand is the gentle touch of your hand holding theirs, a soft caress over their tired face and soothing kiss on a confused brow or your arms around them in comfort and love letting them know in their fear and confusion they are safe and someone cares.
Sorry this is long, but I want you to know you are not alone. What you, and everyone on this board, are going through is hard, so very, very hard. I understand, for I too have been there.
My mother-in-law and mother lived with us until the final two weeks of their lives and my father-in-law passed away here, as well. At the same time, we also cared for our infant grandson. I slept two hours a night for years because my mother was up at all hours trying to go to imagined places, picking up a brother who had died 12 years earlier and going to see her parents who had been gone for over 20 years. We tried every thing imaginable from music to medications to grant her some peace from the torment of activities her mind told she needed to attend to. My father-in-law and mother-in-law also demanded 24-hour care in the final years of their lives. I was totally burned out and exhausted, but putting any of them anywhere else was more than either my husband or I could conceive of doing.
However, two days before Thanksgiving when there was absolutely no way of getting through to my mother anymore, I was forced to make the most painful and heart wrenching decision of my life. She no longer recognized me and I couldn’t control her. She was fighting to get out of bed, yet too weak to stand and I feared she would hurt herself. I was facing the holiday and houseguests. With deep reluctance and extreme guilt and hurt, I had to call the hospice nurse to come and she told me Mom was beyond my care, so we took her to the Hospice House. She not only had Alzheimer’s, but was suffering with failing kidneys. The next day she fell into a coma and sadly, never got up again. My son and daughter-in-law were coming the next day with my two young grandchildren to spend the Thanksgiving weekend. Plus, we were also caring for our 6 month old grandson and my aged father-in-law was still alive and he was becoming more and more dependant, as well. I had every intention of bringing her back home after the holiday because I wanted her with us when the end came.
I was stressed, exhausted and at my wits end. I knew my mother would not want her grandson and young great-grandchildren to have the memory of her the way she was and I didn’t want her condition to frighten my grandchildren either. They live in another state and would visit as often as possible, but Mom had both mentally and physically deteriorated significantly in the two months since they last saw her when she could still talk and recognize them. I felt it was best the wonderful memories of years before remained in their minds vs the illogical, wandering shell she had become. I gave my son and daughter-in-law the option of visiting her, they elected to keep the beautiful memories and not be left with how they would see her now. All her life my mother said she didn’t want to be a burden and I know she wouldn’t have wanted the children to see her as she had become, it wouldn’t have benefitted anyone or honored her wishes.
When they were here two months earlier, we thought we would lose her one day. The hospice nurse came out and told us to prepare for the worst. We all gathered in her bed to say our final good-byes. Miraculously, she perked back up and was at the dinner table that evening. I knew that wasn’t going to be the case this time. So, it was a positive thing they had said their good-byes, including my mother, and felt the love and warmth together that day.
The following week a very close aunt passed away and it was important I attend her funeral, something I knew would be impossible if Mom were here, so elected to leave her in the very caring and competent hands of the hospice staff. I did spend time every day with Mom, although she didn’t realize we were there. Even bringing our 6 month old grandson, whom she adored, in to see and snuggle with her did not get a response. I laid with her, cuddled her and told her I loved her. All the while my heart was breaking seeing her like this and feeling such overwhelming guilt for not having her home with us.
Sadly, after the funeral, Mom had reached the final hours of her life and passed away before we could bring her home. To this day, I wonder if I was selfish not having her with us those last two weeks, but then I tell myself I know that is how she would have wanted it. Life had to go on and I couldn’t have done anymore than I did. My children, grandchildren and relatives deserved my love and attention too, something I couldn’t have done spending 24 hours a day caring for Mom. I had Thanksgiving dinner to prepare and wanted to spend quality time with them as well.
It is still hard today because I feel in the final days, I wasn’t with her 24 hours and she died without us at her side. Yet, my father-in-law died here two years ago and, in reality, I’m not sure it was all that different. He quietly slipped away one evening when we stepped out to the dining room for dinner. I wonder, when our loved ones reach the point of total mental disconnection in preparation of moving on, if they know where they are, only that they were deeply, deeply loved all their lives and we cared for them the very best we could. My husband and I gave up our lives so they could be surrounded by love and family. I know they appreciated all we did for them by keeping them with us.
Yet, what I truly want to say is no matter how much you do, how much you care, how much you give of yourself, in the end, you will still ask yourself could I and should I have done more? I would beat myself up through total and utter exhaustion trying to do what I could when they were alive and continued beating myself after they died. Sometimes, the guilt is compounded by others who offer their suggestions, and condemnations, even though they are on the periphery. My point is, you do the very best you possibly can at the time and as difficult, almost as impossible, as it is, you need to give yourself credit and go easy on the chastising. It is especially hard once you have said that final good-bye and you have had time to recover and rest. The bad memories of horrible health, sleepless nights, cleaning up accidents, not sure you can live through another minute, let alone another day, and wondering if you will ever be normal again, gradually slip away and you are, gratefully, left remembering the good times of who they were before everyone’s life so drastically changed. That is when you wish you could have just one more hug, just one more I love you and wish things could have been different. Monday mornings always make the decisions seem simple.
Go easy on yourself. Believe me, we ALL make mistakes and wish for do-over’s. We ALL have feelings we wish we didn’t at times. If we are honest, deep down, there are even those moments no one mentions when we wish it would all end and we could have our lives back. The mental and physical exhaustion of the caregiver is overwhelming and there is very, very little relief. You push and push and push trying to make them comfortable and happy, giving every ounce of love you have, even if it is imperfect. I honestly believe monies should be established giving relief and allowing caregivers, who shoulder the 24 hour a day responsibility, time away every week for the desperately needed R&R they so richly deserve.
Eventually, the day will come, when we will have said our final good-bye and it is over. Once we are rested, then the guilt sets in again. When I was with my mother, I would try to make myself truly see the struggles she was going through and realize there was no hope of her ever getting better, only continuing to watch her slide down the slippery slope of Dementia Mountain, growing weaker and weaker with each passing day. I pulled her away from deaths door four times, because I never wanted the time to come when she would leave. I wanted to keep her healthy and vibrant forever. Seeing her frail and failing was not an option I wanted to face. The times she said she was ready to go, I said no and fought for her to stay, maybe letting go is the kindness thing we can and need to do. Finally, I forced myself see how difficult her life had become and what a struggle it was for her. Once I accepted that truth, there were days I prayed our parents could be granted the peace of passing on instead of enduring the torturous realities of Alzheimer’s.
Today, I am holding and, thankfully, granted the memory of my mother as she was before the ravages of Alzheimer’s set in and stole her from me. It was the mother I had known and loved for 95 years I so desperately tried to keep with me. None of us want to be left with overwhelming loss and guilt when our loved ones final day comes, but seems no matter what we do, we still question ourselves. We all love our parents and don’t want to be without them, however, medical science, at times, has the ability to keep them alive when maybe, even they, would like to be allowed to leave this life. When the guilt begins to wash over me, I look at some of the pictures we took and listen to the recordings, then I realize her time had come and, even though the loss will forever be there, it does absolve some of the self-reproach. Looking back, I carry the same feelings for all four of our parents. I guess that is what caring and loving boils down to in the end. You love them so much you do the best you can, but wish you could have done better.
So, what I am truly trying to say is, do the best within your power at the time. Don’t beat yourself up for not being perfect or able to do more, don’t beat yourself up because you are too exhausted to do everything you want to or feel you should, don’t listen to others who tell you what you are doing isn’t what they would do when they aren’t even helping, don’t listen to that little voice inside telling you that you aren’t doing enough, and above all, don’t miss the milestones in the lives of the rest of the family, for they count too. Do take time for yourself, family and loved ones who also need you. No matter how deeply you love the person you are caring for, remember you need to be strong to enjoy the rest of your life. Your parents have lived their lives and you deserve to live yours and remain healthy. Whether in your home, their home or care facility, if you genuinely share your love with them, they know it and that gives them the security and joy they need.
Life does go on and you will look back later with so many mixed feelings. That is normal because you loved so deeply and so much. You are doing the best you can under incredibly trying and heart wrenching circumstances. You are human, you are flawed, there is only so much you can do, there is so much that is not in your hands or within your control, a higher power is making those decisions. Always remember and keep reminding yourself, you are a beautiful person and you need to love yourself and go easy on the guilt. When I was going through it all I wasn’t sure I would ever see the light of day again and, at times, questioned if I would even survive. Yet I have and my life is beautiful and filled with sunshine once again. My parents are, and always will be, with me in spirit. I feel their love and presence surrounding me every minute of every day. I also know they loved me through all my imperfections because they know I did my very best, no matter how inadequate. And in the end, that is truly what matters……….you did the best you could at the time under indescribable circumstances.
I know your mother feels your presence and IMHO you are a wonderful, loving, caring daughter, Rachele. There comes a time when all you can do is hold them and love them because that is all they can still feel or comprehend. I don’t know if my mother knew I was there holding and loving her in the end, but I knew it and that brings me the comfort I hope she felt too. Many times, unspoken love is the greatest blessing for everyone. God bless you, Rachele, and all who read this, my heart and thoughts go out to you and are with you. May you and your mother find peace
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