So I'm sitting here this morning drinking my coffee and thinking a lot, possibly too much...

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So I'm sitting here this morning drinking my coffee and thinking a lot, possibly too much...

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My 94 year old mother with dementia has lived with me the past 2 years now since June. She's laying over there bedridden...and I'm sad, crying, feeling guilty that I could've/should've done more about letting her visit her home and be around the things she loved. She lived on the property where she was actually born and raised and loved to sit on the porch and try to figure out what the neighbors were doing, watch traffic etc. We did try to take her a few times when my hubby would do yard work and it went pretty well however the last time was somewhat of a disaster when she informed us she was going to stay and would not budge so we never took her back. Has anyone else ever had these type feelings??? I don't know, it just always seems I'm on an emotional roller coaster feeling guilt about one thing or another and today this is where my mind is.

Alzheimer's & Dementia Guilt Multi-generational Living

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There's always the 'what ifs'. It sounds like you've been a loving daughter and did the best you could.

You didn't do her a disservice by not taking her to the house anymore. If you'd kept bringing her, it would be hurting rather than helping! She would get more and more upset about leaving each time, and that's just painful for her.

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As people with dementia progress, they are not capable of processing information and experiences the way they used to. It's sad, but, part of their illness. There is nothing that they or anyone else can do to change brain damage. The compassionate thing is to prevent any unnecessary suffering and for that you should be glad that is what you did. When you are kind and attempt to prevent pain, you should feel proud of yourself. For those who don't try or who harm others, I get why they may feel guilt, but, for those who have good intentions and work so hard with their care, I don't see where guilt has a place. I hope you can find peace with it.

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We went through this with my inlaws and their lake cabin, which was great for them when they were both able to climb stairs, walk on uneven ground, jump in the lake off the dock and swim, etc etc. Once they moved to indy living, MIL asked to go back and hubby and I looked at one another in horror because we knew a visit would end with MIL in tears and FIL having a panic attack at the sight of MIL in tears. We felt guilt and recognized that it was irrational guilt.

Do something nice for yourself every day, and be gentle with yourself. If you keep beating yourself up you will never get off the emotional roller coaster.

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Bless your heart. Please please don't let those thoughts come over you. Just know you have and are doing the best for her. I was in the similar position with my Mom at the same age. She was living in a condo that she loved. She called it her doll house. I cared for her in her 'doll house' for a long time. At first coming and going each day, cooking, cleaning, giving meds, etc. Until I had to move in with her, after I was called at 3am, by her neighbor, telling me she was out wandering, knocking on everyone's doors, etc. Hen I got there her neighbor had taken her in. She had on 3 layers of slacks and tops, sun glasses on, etc. It was a very foggy night and her condo was right beside a lake. Forgot to mention it was in FL and and water was home to alligators. I moved in with her immediately.

Even though she was in her loved condo, she didn't know it most of the time. She seemed to think she was in a home. She would dress for breakfast, including jewelry and ask when the others would be there. I cared for her in her condo until I realized I could no longer.

I was able to find a wonderful memory care home for her near me. However that meant I needed to sell the condo (which was in my name) and pass on the items she would no longer be needing. Oh my,,,, that was not easy, especially before she passed, but I kept telling myself it was what was needed because this was where we were both at for the very best for Mom.

Even if I would have taken her back to it. She would not have known it was hers. There are sad times through it all, but try not to go there. Like someone told me,,,,,remember it was when she was thinking normally that she put you in charge of everything (legally) and she did that because she knew you would do what was best.

Sometimes you need to use little white lies to make the transition easier for them. Such as, work needs to be done on the house to make it safe, etc. Plumbing not working. Workers on strike. No heat in the house. Road is closed. Etc. But ALWAYS change subject and walk out of the room.

We as caregivers need to do everything we can to keep them safe, along with so much else. I know,,,, now 12 years since my mother's passing my husband is in mid stage Alzheimers. I adapt, live in the moment and try not to be sad about what he/we lost but what we had enjoyed together. Bless you dear daughter. A daughter so many mother's would be blessed to have.

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You are having an attack of the "responsibles". You aren't responsible. Life is. I could sit here at 77 and tell you about the losses in my life. My right breast. A relationship with one of my daughters. My Dad and Mom. Last week, my last little dog.
But you won't think that you are responsible for these, my losses. Because I am not your Mom. But you will try to take on the grief and loss you are seeing in your Mom. You see what is left at the end of all those losses, and in the end of our life it is ALL about loss. The loss of our looks, our health, our mental csapabilities, our autonomy, our homes, our choices, our friends. It is all about LOSS. If it goes on long enough you will look over the steaming cup to see your mom curled into a fetal position much like the one she left the womb in. All the muscles contractured to that final position that I looked at, and while an atheist still thought I saw a cycle the gods might devise for a full circle of life.
I think that all who do hands on care with elders, and all who are aging, recognize the grief at this loss and at witnessing it with all helplessness. I don't even do hands on care for my brother, but since I learned he has a probably Lewy's and since I took over the care of his affairs, I am somewhat obsessed in my mind. I do all I can to get away from it, but you are stuck there, and seeing it 24/7
As to guilt. Nope. I don't do that. I haven't killed anyone. But when you feel guilt please remember that only good people feel it.
I believe, if this is to go on long and long you may need to let go that you are responsible for everything. You are grieving and feeling responsible for things you should not have to. I don't think it will be better. I am so sorry.

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Excellent comments. This was a priceless gem..."But you will try to take on the grief and loss you are seeing in your Mom. You see what is left at the end of all those losses, and in the end of our life it is ALL about loss." That is what is so hard is watching the losses. Thank you Alva

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I know how you feel. I never took my mom back to her house after moving her to assisted living and moving myself back to my own house. That was an awful day when I took her, but I had to remain strong and do it for her own safety and well being. It was a horrible feeling for me to know that she would never be in her very much loved home again, but to also know that she had no idea that she wouldn't ever be back. I do take her to my house sometimes, but I was afraid at her house that she would have a bad experience of having to leave her home again. She eventually, I think in about 5 months, started to think of the assisted living as her home. It helps so much that it is in an old neighborhood and there is a front porch, trees, children, squirrels, and dogs to watch. The more institutional places have larger rooms and more activities but don't look like homes. You have your mom in a home. You did good!

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My dad is 93 and we just moved him to assisted living. His house is not safe. He does not make good decisions for his health and safety. Had to be moved because he became dehydrated and spent a week in the hospital (even with caregivers there every day - they can't force him to eat or drink correctly). However, no sale of the house is in sight. Even though he is in assisted living (and drinking and eating a LOT now because it is readily available 24/7!), we still have caregivers that take him to his house 3 days a week to visit but they don't stay long. I am slowly weaning him away from it. I have forwarded his mail to my house. I am planning to bring his little copier (he makes copies of EVERYTHING!) to the facility so he doesn't need to go to his house to do that, etc. We will slowly show him that he does not need to be at his house and that he has everything he needs at the assisted living. He still has a friend that helps with the yard work and he is going today but will not be picking up dad (which kind of surprised me). He will go and spend a couple hours there. It's going to be baby steps. No point in trying to sell the house in the winter and hopefully it won't attract squatters. Don't know how long this will take.

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It is incredibly sad. I think I can echo what you're feeling from what happened with my close friend's mother. Her responsible older son and DIL had found her a very nice nursing home. Yes, it was necessary - there had been falls, her health was getting poor, her cottage was in an isolated village, she couldn't be supported at home in safety. My friend, her other son, had been sent to clear his remaining possessions out of her home; and while he was packing up I was left looking around the mother's sitting room. From her armchair, with the needlework side table beside it and the tv in front, you could see through one window to the church where her husband was buried, and through the other to the garden she'd tended for forty years.

If they'd left her there, she'd have fallen, broken a hip, been all night on the floor waiting for help to arrive... we know how it goes.

But then again. So? You can't help wondering which evil is the lesser, sometimes.

The big difference is that your mother has you there with her; and I should think that matters more to her than anything else. It's still terribly sad that the life she lived in that community has come to an end; and these decisions *are* dilemmas and they do tear us in two; but guilt? What part of your mother's aging or illness did you do to her?

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I can not begin to count the times that I sat at the table sad, crying and overwhelmed. I will not say guilty because I always felt that I was doing the best that I could do for my Husband and feeling guilty does nothing to help and it only serves to make you question if what you are doing is the right thing.
My Husband also lived in the house he was born in when I/we had to move to a house that was better suited. He actually did better than I thought he would but there were a few times when he "escaped" and tried to go back to the old house. (Once he was gone for 15 hours, the police in the next state north found him and responded to an alert the local police put out)
If you can get her out for a ride, a to a park might be nice. If you can not get her out for a ride a walk would be nice if you have a good sturdy wheelchair.
Do you have Hospice in to help you out? If not you might want to give a call. Most Hospice will have Music therapists, Art therapists that she might enjoy.
If nothing else YOU need help with her and support form a Social Worker, Chaplain and knowing you will have weekly visits from a Nurse as well as a CNA a few times a week. Not to mention supplies and equipment that will make caring for her so much easier.

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I think reflecting on situations is perfectly normal. Our minds wonder. Sometimes we get stuck though and could use a bit of support and a hug.

Many hugs for you!

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Hugs!!
My mind wanders a lot too! If I don’t stop it, when I notice I’m doing it, I start to question myself on everything! The further I get into my “wandering“ I am depressed, sad, and my body aches.
FOG bites me in the butt a lot but I’m slowly learning and getting better, especially reading here from others stories and experiences 😉
It’s an emotional roller coaster for sure !!!

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Hugs for you too! 💗

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Thanks so much to you all for the kind responses and support, means so much. I honestly appreciate this forum so much! It's a place where there's always someone who will listen and you don't feel like you're bothering anyone when you need someone to "talk" to. Even before I started actively participating just reading the questions and responses helped me so very much. Sometimes you wonder where all your friends went when you are a caregiver and I think some people are even uncomfortable asking about or even visiting a person whose main problem is dementia. But here on this site there is always...ALWAYS someone who can relate. Thank you all.

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Quick gut response: You're doing the best you can and maybe it 's not so much guilt, but grief for the mom you are witnessing the loss of. This dementia game has no winners and the rules change daily as you make accommodations for the symptom/change of the day. It's a rough rough ride. But you need not feel guilty. Sometimes...SOMEtimes, a support group can help...I was going to one sponsored by our local Alzheimer's Assn specifically for adult children. Unfortunately at least as far as ours goes, they switched to a more volunteer led organization and there are a couple nice people now leading it, compared to a fantastic woman who was an employee a year ago. But the volunteers (and at one time another staff person who made assumptions and knew it all and lectured the group more than letting people vent and share) are not good at facilitating and I have pretty much decided at this time I don't think I'm going back. But even one or two times might help you put it all in perspective, plus some have one on one telephone access to people...

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I too wish many times that I could have done somethings differently. My biggest “hurt” is that I grieve for my LO now before the worse has happen - death..

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Me too!

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Take out the family photo album - it should help. You can sit with her and reminisce about the way things used to be.

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Yes, Me...Right now, Feel you.

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Yes you want so much for them to have the life they once did, but we can’t turn back the clock. One of the things I remind myself when I get caught up in the sentimental emotion of how dad's life used to be is to remember how fortunate he was to have a good life for so long. That this is the next phase on the journey to the end. And although I truly wish he wasn’t going through such a long slow demise, the sum total of his life is not these last two years. Realize that our lives have phases, all of which are natural when we live into such an old age. You are not in control so lose the guilt over what you didn’t cause nor have control over. Get out of the heart and into your head and realize this is the next phase, the next reality. And be grateful for her past better times.

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What a beautiful expression of reality, your words are so true, and they are words we all should think of at those times of going through the feelings that countrygal155 is going through, I will save your thoughtful response, it made me think of my guilt feelings and put them in retrospect...we always wish we could have done more, we always have guilt, I hope we all can realize we can only do so much, just let them know how much they are loved and remember that we all do the best we can in that love for them.

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You did the best you could do.

Advice: Honor her and yourself...and find a way to forgive yourself and live a productive and happy life.

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It is the sadness of life. No matter what we had or what we were, if we live a long time, all that is gone. You are a witness to this and it is sad. Try to find interests for your self or escape into reading. We really change many times during our lifetime. At the end it looks so different. But that is life. The past does not exist. We cannot live in the past. Be grateful for today and do something new.

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The emotional roller coaster you are on is one that almost every caregiver experiences to some degree. I am going to suggest that you call the Alz. Association in your area and try to find an Alzheimers support group near you. I was a care giver to my husband for 11 years before he died 19 mos. ago. If you do not take some respite time, or find a support group, the danger of you dying before your mom increases and then what is going to happen to her. First of all you need to take care of yourself. That was one of the hardest things for me to learn and it took two drs. telling me, "You need to take care of your self", before I was actually able to seek the help I needed. You are not alone in your feelings. Please make a few tel. calls, today and good luck to you.

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Great advice Nancy! Just wanted to add that the Alz Assoc helps with all kinds of dementia, not just alz.

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Countrygal55 - I agree with what many of the others have said. Also, please remember that your mom doesn't so much want to go to a 'place', as she wants to go to a 'time'. Physical things matter because of what they mean. The property where she was born and raised - cherished because of all the memories. And the things she loved - cherished because of the memories. My mom lived on an island near me with a beautiful view of the water and mountains. She loved it there but couldn't be there anymore because of strokes, falls and dementia. During her last months on hospice I sat next to her, held her hand and told her stories of her past. The people in her life. The places she lived. Her memories. I would start with, 'Remember when...' Even with dementia, she loved it. She died in March, her beautiful white hair swept back and a smile on her face. She was 90. I feel guilty too - about so many things. But, as the months go by since she passed, I slowly feel good about a lot of decisions too. My mom was well cared for until the end. I am so happy for that. Wishing you peace in your own heart. Hugs!

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I love how you asked your mom “remember when?” We’ll done. I need to remember that.

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My mom is 94 and has lived with the past 2 years also. I think she has beginning dementia, but after a stroke and heart attack a few months ago her memory and sight are worse, so it may be that.

But I digress.... my mom finally agreed to sell her house (in a town 3 hrs from here), so finally have it cleared out and some updating being done to put it up for sale.

My mom also has wanted to go back over and see it, and had asked through this entire process so far, and I know it would have been much harder on her, and I don't want her to have another heart attack or stroke, so I have repeatedly said no.

Mom has lost weight over the years and had so many clothes 2-3 sizes too big in 3 different closets, probably 40-50 pair shoes and purses, not to mention all the collectibles. She had hoped to bring EVERYTHING here and try to sell it.... after much decision-making on my part with input from daughter who was helping a lot, we never brought Mom over there, and we had an estate sale, and donated a lot after that. Some of her things we brought over here to storage but that is expensive, so will have to figure that out later.

I just know my mom could never stay by herself again... I said NO. There has been a lot of give and take on each of our parts but she will remain here with me..... as long as it works out. I hope she doesn't live long enough to have to go to ALF but that could definitely be a possibility down the road.

The roller coaster is an excellent description of the ups and downs.... this is the 4th time in my life like that, first with teenaged daughter running away/bad crowd, second with husband and years we went through his cancer, 3rd in a short second marriage with a severely alcoholic/mental health problems, and now 4th... with my mom. This aging process is one very difficult thing. We will survive, but it is a long road. My heart goes out to you, and yes, there are many of us who understand.

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This gamut of emotions is normal. My mom has been gone for almost 4 yrs. now and I still feel guilt and weepy, though people tell me I did everything I could during her last years. I was a caregiver for about 17 yrs. total. You sound like a good caregiver to your mom. I wish strength for you on this journey. It is a roller coaster, so what you are feeling is normal.

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We all can feel conflicting emotions at times: happy for current blessings while mourning losses. It seems that mom's house will need to be a "loss" to her since it sparks problematic behavior. Celebrate the abilities mom does have while saying a fond farewell to things that all need to let go of.

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Hi Cg,
So many of us on this forum can relate to your pain, and I see you've received many sage responses.
You are a decent human and doing the best you can for your old mom.
If you haven't already, consider talking to a professional to help you process your feelings of guilt and sadness in this profoundly difficult time.
I wish you well.

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Emotional roller coaster. Good description. I think some people are more sensitive to each bump, each up & down but the main thing is that we are still on the rails!

Be kind to yourself when you are low. Acknowledge it, accept the decisions that were made in the past & then come back to now.

My Mum had talked for years about taking a ferry trip - it's 12 hours from our city overnight or day to another city. I encouraged her over & over but she & Dad just wouldn't go (even when fares were on sale). I offered to buy the tickets for a special birthday but she said she wouldn't actually go.

The last 20 months I have been on that roller coaster. I've been all over the place trying to find my role on the spectrum of *helping -enabling - stepping back - getting perspective of REAL care needs - getting care needs met - having my own life too* with againg parents, disabled sister & teen child problems - a mega storm of needs swirling around me.

So I took a break. Went on that ferry. Sat & looked at the blue sea all day & gained perspective & acceptance.

Yes I felt sad. Sad Mum didn't ever take that trip. Sad it's too hard now (in wheelchair). Prob be 10 mins into the 12 hours & she'd want to go home. Sad I took the trip & didn't tell her. She'd want to be carted to the dock to wave me off .. hard work for Dad & useless now she has lost so much sight (stroke). May also stir up her regret she didn't ever go. She would have fretted the whole time if she knew I was away, needing constant updates. So I turned the phone off.

Visited today. Looked at their tired faces, Mum in clothes she won't wash, Dad hadn't shaved, sister has sore feet & even more trouble walking.

Just enjoyed a visit today... that's all I can do. Hold a hand for a while.

Hugs to you as you hold a hand too.

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Yeah! That feeling when you walk in the room...the tired look on their face, the small room that is now their home, the same clothes worn time after time... I get sad too when I do fun things without mom and I can’t tell her about it anymore or ask her to join.

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Yes, I have days like that. I have a lot of anxiety. I keep myself busy and it goes away. I think it is very possible to overthink and usually ends up making things worse. Things get blown out of purportion.

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As I read these poignant accounts, I wonder if it will help those who have gone through dementia with a LO if it ever happens to themselves. Being on this site has made me ponder what "aging gracefully" means, if anything, or is it just a platitude. I have personally not yet fully walked in the shoes of these commenters. I currently am managing care for 4 women ages 85 to 101.5, one with advanced short-term memory loss in a LTCF and another with advanced dementia at 97 but physically very healthy and mobile and still somehow being cared for by her 101 yo sister. My own mother is 90 and is very functional overall. I've "gone to school" on these ladies' experiences (plus the illness and passing of a stepFIL), so I'm on this site "early" and am learning so much. It would help so many if they could just get to this site before they thought they needed it. So often the beginning of caring for LOs starts out in crisis (a fall, an empty bank account discovered, another fender bender, sudden incapacities) and their children have no real time to adjust to it all as they attempt to put out (or control) the sudden dumpster fire that has become their parent's daily life.

I encourage everyone who has come through dementia to go onto your local Nextdoor.com intranet sites and post your availability to help those who are at the very beginning of the journey (or hopefully earlier) and are searching for guidance (not professional advice, just practical). I've done that in my area and have helped a few people so far. I did this on Friday night when a woman found my name and wanted to meet to talk about how she has flown up from Atlanta to attend her father who just shattered his femur. She left her 16 and 10-yo for a week to sort things out with her parents' care. Her dad is 88 years old but mentally totally sharp but had no end of physical trouble after his fracture. Then this woman and her sister discovered that their mom, also 88 and very fit and sharp (or so they thought) was in a state of confusion, over-medicating herself, not able to take care of her husband after rehab, etc. The daughter I was talking with discovered pills and piles of cash stashed everywhere, and her mom couldn't figure out how to raise the thermostat 1 degree. And so the crisis begins. I was so grateful to be able to give her some practical suggestions to help that family. So, I encourage everyone who has been seasoned by the D Experience to "pay it forward" to others just beginning that journey in more venues than just this one (wonderfully helpful as it is). Peace and blessings to you all!

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Guilt will eat you up IF you let it. You must know that you're doing everything that you can that is humanly possible. You're a good - not GREAT person! Prayers sent to you. And yes, I, too, know the emotional rollercoaster.

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Oh, such a good answer! Really is a great response. Please keep sharing this advice with others.

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i know your mom probably needs your assistance 24/7, but you really need to take time out for yourself. i have caring for my 77 year old mom for almost 12 yrs now, and just last year moved her up to my husband and i's house in Indianapolis a year ago at this time. it has been a rough year. she has severe osteoperosis, recently had a bout of some version of diverticulitis and has to be on oxygen at night. i have to take time out for my other career(i am feeling like more and more my main job(i don't work outside the house anymore due to my own borderline personality disorder and can't work) is caregiving. i have accepted this and writing is my second job. this is what i do when i can steal time away for a little while. keep your head up. do you have hobbies. i have given up feeling guilty for working on it. i and other people have reminded me that writing is my true gift and never give up on it. so i haven't. don't stop drinking coffee though, but do stop thinking too much, i made that same mistake.

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So I'm sitting here this morning drinking my coffee and thinking a lot, possibly too much...

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