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I am new to posting here. My mother is 96, and totally bedridden, incontinent, and has to be fed, and has dementia/Alzheimers, and lives with myself & my husband. I am her only caregiver, but do have enriched nursing care come 1-2 times a week in to monitor/help care for her pressure ulcers that only recently started to develop. All the nurses say that I am doing an excellent job of caring for her, given the situation. I am always feeling guilty that I am not doing enough, and know that she may be soon reaching hospice level - she has been on the decline for the last 3 years, in the past year, losing the ability to walk, and now has to be fed almost like a baby, and is sleeping a lot more lately.

My Father's dying wish was that I 'take care of mother' and I have tried to do the best I can. It was also her dreaded fear that she would have to go into a nursing home, and she often stated she would rather die first. I promised her that I would take care of her, and also do not want her in a nursing home. She was always dependent on me for most everything, and I have tried to be a good daughter, but find myself often feeling resentful that she always demanded a lot from me, even when Dad was alive. In fairness to her, she was a good & loving mom, as far as she knew how to be. I also adored my Dad, and miss him very much - we had a loving home because of both of them. I am now almost 64, and I am worn out & stressed out, as I also have to care for my husband who cannot do much because of his COPD. My only sibling is a brother who lives in the next city, and is handicapped, and he & his wife are dealing with her elderly mother, so I can't expect much help from him, and want to remain on good terms with them. I don't expect him to come over & help, which would be difficult for him anyway.

I guess I would feel better if I knew I wasn't alone in feeling pulled in 2 directions - guilt that I'm not doing enough for her, and resentment that I am doing all of this on my own. I have faith in the Lord, and ask for His help daily in caring for her & dealing with all the emotions that go along with seeing her decline - anger that she is like this - like "WHERE IS MY MOTHER & what have you done with her"? I want so much to be able to talk with her again, and learn more about our family history. Never realized how much I would miss hearing those old stories. Seeing her frail little body, and remembering what a beautiful strong woman she was. Wondering how I am also going to end up if I live to be that age, I have no children to watch out for me.

When the time comes - I know that I will be grateful that I was able to care for her, but it's the process that is so difficult. Sometimes I wish the Lord would just take her home, as I know that she would not want to be like this. Then occasionally she surprises me, and out of the blue - says something that actually makes sense, like "I love you honey", or "thank you honey" when I feed her or wipe her mouth. It's then that I miss my "normal" mom so much, before this scourge of dementia stole her mind, and realize how much I will miss her when she's gone. No wonder she used to have this saying before her mind started to go... "Old age is cruel"..... Thanks for listening - I guess I needed to get this out.

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Yes, it is normal to be both guilty & resentful. You are doing an exhausting 168 hour week job that you were never trained to do, unless you took courses and had worked for a caregiving agency. I doubt professionally trained caregivers who have clients feel guilty about their work. They are able to go home after their shift and enjoy their family life, sleep well, and awake fresh for the next morning.

Resentful, of course. My parents [mid-90's] had a wonderful fun-filled 25 year retirement. I keep wondering when will my retirement start, and it won't be as exciting as theirs as I am now in my own age related decline. I still have my career and refuse to give it up... it's my sanity. My parents still live alone in their own house, which is not elder proof. I am a basket case of worry.

As for nursing homes, our parent's generation had a different concept to what nursing homes are all about. They never have had the chance to see what TODAY'S homes offer. They still think such a place is dark, drab, with unsmiling faces. I tried to get my parents to see a wonderful retirement village which would be like living in a 5-star resort... Dad said, maybe in a couple of years... [sigh]. Even though I told him it's not a nursing home, he and Mom still wouldn't budge. I probably will be living there before they do :P
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I am new to this website as well. I read your post and have to say that you are normal as normal gets with emotions. You resent the disease that is robbing your mom of everything. You hate it!! You feel quilty because you love her. You're doing the best you can possible can. If your time allows...look for a support group. It will help with many issues.
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Yes, it's totally normal to feel the way you do. I just hope you have a good outlet to vent those feelings of guilt and resentment. My mom is 95 and in much better shape than your mom, but I still feel resentful too. I don't feel guilty, because I know I'm doing all that I can possibly do. My brother lives states away and his involvement is to call my mom once a week, because I told him I needed one day to myself.

I've been doing it for 13 years (and had my dad also for 9 of those years). My mom doesn't live with me, but I do everything for her. She's ready to go and my life is on hold. I'll do the very best I can for her as long as she's here, but I do resent the loss of my own independent life.

I don't have children either (and am not married) so there's no one to take care of me when I'm old - if I live that long. Over time I've developed ways of coping - good friends to connect with and regular physical activity to wear me out physically. So I'm good. But I empathize with you and you are definitely not alone in having those feelings.
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Lynette, you sound so normal to me. I've been taking care of my parents in their home for five years. My father died three years ago, but my mother is still here. I feel a lot of resentment, then feel guilty for feeling that way. I do so much for my mother, but feel guilty that I don't want to do more. I see my own life passing me by while my mother is in her final years and wonder what lies ahead for me. I know I've dedicated such a large part of my life to being here. I wonder if I'll ever be able to rebuild anything that looks normal.

I guess you can say that we get torn between helping them and rescuing ourselves from the potential harm that comes from neglecting our own needs.
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Hi Lynette...I can totally relate to your post. I care for my mom who has dementia. She is 93. Thankfully, she is still in relatively good health but it's still difficult caring for her and gets more so all the time . Just like you, I have times when I feel guilty. Guilty for what, I don't know!! It's nothing rational , believe me. How could we feel guilty when we are taking such good care of our moms? It's something that we have deep within us that really makes no rational sense and is not grounded in reality. But, there it is! I also feel resentful sometimes too, even though I love my mom so much and can't imagine my life without her. I still wonder when I will be getting a life but then I feel guilty thinking that! It's a vicious cycle!! You sound like a wonderful caring daughter doing everything you can for your mom and I'm sure she really loves and appreciates you. The times when she says she loves you and thanks you, shows that she knows how good you are.
Like you, I also have no kids and wonder who is going to be taking care of me? I have no idea. Wishing you the best!! Your mom is blessed to have you!!!
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Thank you all for your support, caring & understanding - and empathy.... It really helps to know I am not alone in how I feel. Wish we all lived together in one neighborhood to keep each other uplifted - wouldn't it be nice to meet up at each other's houses for cheesecake & wine & chocolate, of course!!!

God bless you all who took the time to answer my question. Looking forward to joining in future discussions. I am glad I found this site.
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Yes, of course it is. You can't make her better and it sucks.

Hugs and prayers.
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Yes I will agree also that the way you are feeling is normal. I'm sorry for your situation and want to tell you I honestly understand how your are feeling personally. I have had same feelings as you do mine I guess are bad because I feel resentful awhole lot and for me that isn't such a nice way to feel all the time. I myself do not have children so I believe God will see in your life if you are ever in need that you will be helped feel he will make sure of that blessing. Also seems to me you are good daughter and doing a great job taking care of your Mom feel free to vent to me anytime and sure all of us on here feel that way a lot of people on here have helped me .God Bless You and remember to try and take care of you to. Take Care Sandy22
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Thank you Sandy - what a sweet post. God bless you and also vstefans, too!
hugs & prayers to you, too
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Hi Lynette. There are many of us here who can thoroughly relate to your situation. It's interesting to know that quite a few of us do not have children. My husband is 88 and I am 68. I have step-children, step-grandchildren, and two wonderful step-great grandsons. I love all of them, but they live a long way from where we are, and we don't stay in touch very often. I do have wonderful friends here, though, who are like family to me. We got news today that my husband's bladder cancer is active again and is going to require surgery next month. The doctor was very positive, but with cancer who really knows? Anyway, I just wanted you to know you are not alone in your feelings. I lost my mom about 4 yrs. ago. My mom, who never said "unladylike" words, one day announced to me that, "Getting old sucks!" That pretty much sums it up, doesn't it? My heart and prayers are with you.
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Hi ProfeChari

Very sorry to hear about your husband's cancer. Prayers are with you and him that he will get thru this just fine. It seems that is always something.. My hubby has advanced COPD, and it's a struggle to watch him battle those issues that go along with this rotten disease - especially with the severe winter this year, and he can't shake off these respiratory illnesses plauging him.

I worry that I will lose both Ma & him in a short amount of time, and that is terrifying. But - I know that the Lord will be with me somehow, He always provides what we need.

God bless.

LynetteD
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Lynette, I don't know how you do it. I think all of us miss our "Mothers" as they were in the past. I don't feel guilty anymore or resentful, as I see a counselor and find this group to be so supportive. Stick around, as there are wonderful people here that really care about you. What you are doing is a wonderful thing. Try to enjoy life as much as you can. It is great that your faith is so strong.
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thank you Brinoz.. It certainly helps to have other folks around who understand what this is all about.

thanks for your support.

LynetteD
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Of course. Guilty because we can never do enough or live up to our own expectations of ourselves let alone others...Resentful, because "this should be our time" to enjoy grown children, friends, winding down of lifelong careers, promised trips, and just plain life and time to smell the roses...but that "time" is now robbed from us due to care needs from others we hadn't planned on.
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Lynette
You are doing a great job. And yes all of your feelings are normal. My mom is 95 and was liviing on her own until 6 months ago. She is now in a facillity. Very fragile and has multiple medical issues. She has 24/7 nursing care and we have seen a great improvement in her medical condition. (she was constantly in and out of the hospital when we were caring for her at home). My sister struggled with the "not going to a nursing home" issue. A promise she made to mom years ago. She told mom she would take care of her. A friend of hers who had been thru the same thing told her that she was taking care of her by getting her the best care plan she could i.e. being at the facility where she was safe and taken care of around the clock. That seemed to help her but she (and all of my siblings) still feel guilty. But honestly seeing how she has improved physically while there does give us some relief. someone said in an earlier post that nursing homes aren't what they used to represent to our parent's generation. My mom has the same care givers everyday and they have gotten to know her and her likes and dislikes.
and she has gotten to know them and trust them. I know I sound like I am trying to justify the decision and lessen my guilty feelings (and I probably am). It is so hard to face the decline mentally and physically that our parents are facing. We want them to be as they were when we (and they) were younger. As for ourselves, it has made me realize the need to make a plan for the day when I might be in the same position. And make sure my family knows what I want so they might not have to make all the decisions and live with the feeling that those decisions produce.
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Lynette D, you are feeling this way because you are a wonderful, loving human being. But, only a human being and of course it is absolutely normal for you to have these emotions. I too take care of my chronically ill 77 yr old mother, with a host of medical conditions and now early stages of dementia. I have two siblings but they do not help me at all, even when I have asked and cried for help. I do have two beautiful grown children but I would not want them to go through what I have in dealing with my mother. Just remember that we caregivers are doing the BEST that we can on that given day. If you are lucky find a local support group but, just know that we too here are more than willing to hear you out!! Hugs and blessings.
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Dear LynetteD
So sorry you're going through this, but when I read your story, it brought tears to my eyes, because I went through this with my mom. First, try to get some little breaks if you can because you need to take care of yourself too. Find some times when your mom is either sleeping, being bathed, or being fed. It's O.K. to leave for a little bit; you'd be surprised how much the little breaks help you to be re-charged! I would also tell you to enjoy those little moments when she is lucid, even for just a moment. My mom will be gone 3 years this August, and I still miss her. I hate that Dementia stole her from me (even when she was alive, there were days when I didn't even recognize her - my own mom!). Keep up the faith, and I hope things go better for you. It's not easy caring for her and your husband as well. Good luck with all of this and God bless you and your family.
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Hi Lynette, I believe it is quite normal for you to love, resent and feel guilty over the caring of your mother. The love of who my mother-in-love was is what draws me back to caring for her. She was such a giver to me and my family, her church and her community. We all grow tired and weary and when this comes so does guilt and resentment...I always say it will be better in the morning. My husband and I have been caring for his 85 year old mother who is legally blind, a fall risk and suffers from dementia for over four years; as we watch her decline in health we keep adding things in our home to keep her safe. However, the dementia is a different story. She is aware of her situation and when she says my memories are just fading, I respond let me be your memories. I remind her of stories of her life. When resentment slivers into play, my husband and I take breaks by running errands or getting out with a friend. When guilt of seeing mother lying in her bed no longer wanting to do anything, I remind myself that being in a nursing home would be far worse and the loving environment that we provide her in the right solution for now. As long as I can provide a safe environment for her, we will care for her. Everyone has a tipping point - make sure you find someone you trust to love and encourage you and reinforce that your feelings are all natural; and find time to laugh. Praying for you...My husband and I have a latest saying....We are all in this together. God entrusted you with the privilege to care for a saintly woman. Keep Strong in your faith, read God's Word and let it run over you.
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It is simply a normal process and important to reach out for help and team with others on this journey.
My husband, family and caregivers all team with one another such a blessing. We are also transitioning of having Dad be placed with in a VA Home nearby as Dad has been progressing with his illness and his cognitive skills are simply not there in so many ways.

Our family is most definitely a family right out of the movie 50 first dates and we surely do our best with taking one day at a time and keeping laughter in it.

My husband and I both work outside the home still at present and truly are blessed with those who help and love on Dad and ourselves too.

Alzheimer's helpline 800-372-3900 or website www.alz.org is available 24/7 a wonderful resource in many ways.

Blessings and keep the faith. Hope you may watch the movie 50 first dates and smile like our family.
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I think of the cruelest thing ( and they do not mean to be cruel, I know) is for a parent to make the kids promise to never put mother/dad into a NH. The kids are wracked with guilt if that is what they have to do at some point. My dad saw how hard it was to care for him at home and he purchased long term care ins for mother. Now she needs it, and the rest of my sibs won't agree to USING it. Oh well--sounds like you are doing a wonderful job. I, too, feel like I am doing a bad job at caring for mother, and I am only a once or twice a week respite care for my brother, with whom she lives. If it were up to me, she'd be in an ALF...but that's another story. I think we feel guilt because we cannot stop the downhill slide and we see the confusion in a once clear mind. AND you seem to be doing this all alone. Try and take time for yourself and try to come to terms that at some point you may HAVE to have her placed. I really don't think your father would be angry--the NH of our parent's memories are really sad, depressing places. Mother was in a Rehab/NH after hip surgery and she could have lived there very happily forever. It was lovely. we are fortunate to have extra insurance and a couple of my sibs are quite wealthy, so cost is not an issue...yet she'll never live in one. It sounds like you are amazing--I could NOT care for Mother that way. You are very blessed to have had a loving relationship with her. I have not had that, and it's too late to start now. I am truly amazed by people who can lovingly care for aging parents, esp when they have demetia----you are wonderful. Hugs to you!!
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Lynette you are doing a great job!

Yes it is very normal to feel the way you do. Talk to the Hospice folks in your area, and find out the services that they can provide. (Sounds like your mom probably meets the requirements for Hospice) The extra care givers that can come in may give you some time to get out of the house and recharge. I have started taking and teaching art classes at the local senior center. Low cost but time that I can just think about the project and not focus on mom or what I am not doing with my life. Friendly faces and light discussions whenever you stop by.

Find a support group for yourself - it really does help to download with other caregivers that understand where you are coming from. I have found one that meets twice a month and I hate to miss it!

Sometimes the promises we make are not made with understanding of what they really mean. Taking care of your mom may mean considering placement if she needs the round the clock attention that multiple people can give...hard decisions I know.

Remember this site is here...lots of folks who will listen. You are a good daughter!
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Lynette, as you have already heard, your feelings about the situation are totally normal. You didn't ask for this, but I wonder why only nursing care 1-2 times/week? Is that a financial issue or by choice? I wonder about you taking care of yourself and your marriage. I don't mean to offend, I know your plate runnith over.
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Regarding a couple of questions concerning Ma.. Re Hospice, she was evaluated a few weeks ago, and it was determined that she was not quite Hospice ready, as she was eating (although pureed foods) & liquids ok, and peeing & pooping ok, although incontinent. Also - Ma was smiling & responsive to the nurse who was out here. Her Dr was also out on a house call to see her in December, and if there are any pressing medical issues, I'm only a phone call away. I don't know why they don't deem it necessary to come more than 1-2 times weekly - but have said that if I need more visits - they would come out - but so far I have been able to change her & tend to her pressure sores, which seem to be healing up one by one, and I ordered some equipment that aid in her recovery, always with the oversight of the nurses, who agreed that the sores are healing up. I'm not sure what more could be done for her at this point, other than seeing that her needs are met & that she is comfortable & as happy as she can be given her state now. I've noticed that she is refusing food more & more, so I have to make more & more attempts at getting food down her. But - she must be getting enough - judging by what the amount of poop there is.

Only God knows how much time she has left, but she's fooled us before, when the Drs at the hospital thought she was only days away from the end, and that was last November. She continues to surprise all the time...
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Reading your honest words helped me connect with those same feelings that I've been suppressing for almost two years taking care of my 92 year old Dad. I so know how you feel. The daily frustration is real and self-hate a real possibility, however irrational. I have a brother who offers to "help out" but what he really intends to do is to take Dad and place him in a home and get access to his money and spend it all - leaving Dad finally with me, having used up all his money. He hovers over us like a vulture. So I do all the work myself and take on every responsibility. I know Dad appreciates it but it is heartbreaking to see him in the decline. I never know from one day to the next what "adventure" we'll be having. I too am single with no children. I found it interesting to read so many posts from women like myself in the same boat. None of us knows who will take care of us in the end. I wonder if there is a tendency for single women with no children to take on this responsibility. I guess it doesn't matter. What matters is that we try to stay as sane as we can, get good exercise like someone posted in a suggestion, and try to keep up our spirits. We have to give ourselves a pat on the back every day for doing what we are doing. It never feels like enough because we are looking everyday in the face of someone in pain and misery because of old age who we love so dearly that we are willing to give up just about everything to take care of. No wonder this responsibility makes us sad. I will suggest to you what I tell myself and that is to give yourself as much tender loving care and understanding as you do for the person you are caring for. I know there is precious little time for yourself, but just take a few minutes out each day to sit quietly and thank God for being alive and able to help. When there is nothing and no one anymore to depend on, we just have to trust that it will all work out somehow. Blessings on you!
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Lynette: This may be the most heart wrenching thing we ever do. Yes they are full of surprises and yes we are pulled in a multitude of different directions.
Yes only God knows. Keep Him as close as you can. In His hand and under His wing is where we need to be.
"Well done good and faithful servant" is what we all aspire to hear from Him in the end. You are doing it.
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Yes you are normal. I have been on this site for a little over a year (since mom, 81 this year) moved in. I am single but am in a relationship. Fortunately, for me, he is ok with me squeezing him in when I have time (he lives in the next town). I am fortunate that my mom has only mild dementia and is able to be on her own while I am at work. I just have to cook her meals, do her laundry, clean her bathroom etc. I know that one day I will be in your shoes and am not looking forward to it. I was the only one of her kids that promised not to put her in a nursing home. I told her, so long as I was physically able to care for her I would. And so I shall. I just hope this site is still around!! Bless you for being such a loving daughter.
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Dear Lynette. I am mostly a reader of these posts and rarely respond, but i am a board certified geriatrician and also daughter of 2 aging parents, 82 and 94 years old. What you feel is NORMAL. You have done a beautiful job. You are human. And that is all you are. Human. "None of us as humans are privileged to understand the meaning of the universe" (quote from my 94 year old dad.) What I can offer is to encourage you to utilize hospice services and understand that hospice is not only for the last days or weeks of life. Hospice is for the last 6 MONTHS of life - and that none of us have a magic ball to determine when that 6 months occurs. Your mother could be there, as difficult as that is to believe or recognize. It doesn't mean that if your mother lived longer than 6 months, she would no longer be cared for by hospice. Hospice would reassess her and re-qualify her for their continued care. The biggest mistake doctors and families make is calling on hospice too late - when their loved one is in their last days or weeks of life on earth - instead of utilizing their services earlier on.
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Wow, except for the alz/dementia part, I could have written your post. Moved mom here last year. 92, pretty healthy, but child like sometimes. Confused, and of course, I never know when she is spot on or in lala land. No disrespect intended. Love mom, we never had a relationship growing up, trying now? And the photographs! OMG, so many, and in bogs, boxes and I have no idea who most of them are. And her childhood, young adult stories, geez, never the same. Comprehension is intermittent too. I think I feel most guilty because I get upset, angry, resentful and KNOW none of us are promised tomorrow. I so want to enjoy however much time I have with her. I am with her 24/7. I too have great faith and am always asking God to help me reflect Him, love on my mama, not get upset. Such a challenge. Thanks for sharing, I still feel bad, but better... Stay the course, God won't leave us, He already promised that.
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I am in awe reading your post. I recently had to care for my mother, she lives in another country to where my husband and my family live so it was a strain leaving them and then leaving my mother when she got better. Yours however is continuous daily care... and love. I can't really begin to understand how that must take its toll on YOUR well being. Make sure you take time out for just "you " and don't feel guilty about that. I'm sure your mother would want to know her daughter is managing to carve out a life for herself as well. She wouldn't want it any other way. God Bless
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Please dont feel resentful because you are doing the best you possibly can. Feel happy and cheerful when you are with her and also have bright lights and music playing. The objective is to give her moments of joy and sense pleasures to the extent possible. God bless you and mum
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