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Hello, my father has dementia. It has been a long and difficult road. He lives at home with my mom and is under hospice care with a caregiver that is there for him 6 hours per day. He is at the point where he is bedridden. He sleeps most of the day and whispers and whimpers. I confirm he feels no pain with hospice and he just seems dazed. I want him dazed and unaware so he does not realize he is dying. My dads wishes have always been to die at home and to be buried in a National Cemetery... I have made sure he will have both.... however I use to visit my parents every Sunday for the entire day. I did this since I married and left their house. I did it up until quarantine. I havent visited since Feb to be safe... but I am on top of his care daily. I have a young daughter and I’m trying to give her a lot of attention because in the past I was always so busy. I feel some guilt because I may be using quarantine as an excuse to not face my dad during this ending stage. I arrange everything for his care... I send them groceries weekly... I handle everything for them... hospice, bills, caregiver, medication, make sure they have food and water... treats... I have arranged where he will be buried... how it will be handled... but I can’t get myself to visit because I cry and get so depressed that I can’t function... I went through this for the last 10 years with my dad... does my inability to visit now mean I’m weak? Am I terrible? At the very last stage I will be there... but I can’t handle it right now and I've made sure he is taken care of. Am I horrible?

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Dear cetude (below), My mother passed away in the evening about 10pm. I would not have been there anyway. She was in comatose condition. However, about week earlier I was at the NH to see my mother. I was massaging her neck and talking to her. Normally she would not respond, but that day she told me that she loved me, and I told her I loved her too. Those were her last words to me.
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First of all, to anyone who has scrolled down and was flabbergasted to find a massive lack of compassion for how @Lookin4hlp feels, I'm on your side.

It does no good to speculate, but I must say, I wonder if most of these people have not seen much true suffering or death in their lives.

I'd also like to say that I realize the dying and/or seriously I'll person in a scenario such as this is often hurting, in multiple ways, more than the caregiver. However, that should NEVER be used to discount how the caregiver feels.

I am in a similar situation. My father has dementia, in addition to multiple other ailments, and is now bedridden. It's been a rollercoaster of making some positive strides in recovery, and his baseline falling lower with each low point. He will never recover and will continue to decline. I know this.

Both of my parents have suffered much in their lives. Countless doctor and hospital trips, surgeries, and scares. My sister died when I was 5. I never met my grandfathers, and my grandmothers died when I was still young. My best friend died in my early 30s. I've had other friends and many of my parents' friends die along the way. My mother died in 2018. I've seen a great deal of suffering and death in my 40 years on this planet.

I am my father's POA. While we did have home healthcare providers come to his home 2 or 3 days a week, perhaps an hour each time, to attempt therapy with him, I was his sole family caregiver and helped him until his needs exceeded me. I ran errands, took him to Dr visits, arranged his pills, paid his bills, etc.

He has been to so many medical facilities and is currently immobile in the hospital. I remain extremely involved in decision making and up until recently, I saw him often.

I am currently at a point where it is extremely emotionally difficult to see him. I only want the best for him. I want to be there for him in all ways, but everything has added up. It hurts, and I feel guilty and regretful, but it feels overwhelming. He is my last living close family member, but I am burnt out.

And for those of you who would suggest counseling, I do see a counselor who I feel is helpful and good at her job.

I write all this to demonstrate that not only do we all have and live different life situations, but we all have different capacities for dealing with these situations. Even if there was no background information to go on, don't be so fast to judge how someone "should" act or feel.

@Lookin4hlp, you are NOT weak, you are NOT terrible, and you are NOT horrible. You were doing what you, AS you, could do for him. The fact you even posted and asked questions on this site makes me feel you cared deeply.

I am sorry to read of your loss. Please know that as much as a stranger-on-the-internet's opinion may or may not matter to you, I understand how you must have felt. I truly hope you and your family are coping the best you can. Have a good life.
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Have you heard of the 10-10-10 rule? It can help in difficult situations.

Basically, will you remember/regret how you handle a problem in 10 minutes? 10 months? 10 years?

I’ve used this strategy myself and come to a decision I knew I could accept.

Good luck to you. It sounds like you have been an amazing daughter and your parents are blessed to have you.
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You are not horrible, but you need to spell your mother from the constant company of your father's illness. However difficult it is for you, it's doubly difficult for her. Yes, it will make you depressed and you will cry and be nearly non-functional, but hiding from it won't help and will only make you feel guilty (I mean, you're feeling pretty guilty to write this). Gather yourself up and visit, sometimes the imagined is worse than the reality. You don't have to spend the whole day visiting, but maybe an hour or two will get you to where you are less guilty but more comfortable about your dad's state. Good luck, it's tough. Sometimes we have to do what we don't want to do, but "you got this."
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You're not at all horrible. Or terrible. And I don't think I'd call it weak, either.

But I think you'll going on being desperately afraid if you don't go and see him, and then after he passes I think you'll have trouble forgiving yourself for not having faced this.

And what about your mother?

Go and have lunch with your mother next Sunday, and if you feel up to it sit with your father for half an hour before and after. You're already tormenting yourself about what's happening to him - actually seeing him should help get the fear back into perspective.
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If it were my parent, I would go see him.
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Now that you and your dad are vaccinated, I would visit as you did before. It is the kind, thoughtful, and humane thing to do. Remember that very ill people register your words, touch and interactions. If you are questioning yourself as you appear to be with your comments asking if you are a terrible person for not visiting. You don’t want to have regrets and once they are gone, you won’t be able to change what happened or how you managed the situation. It is something that you will live with for the rest of your life.
A friend of mine who is in a loss support group, was just taking about how there are many people who had significant regrets in not caring for or visiting there sick and dying parents. This regret typically appears appear a year or two after the parent dies. Now they seek support in dealing with their pain and guilt for not doing the right thing in supporting a parent in their final days.
I have been caring for two dementia parents for over 10 years. Doing everything including frequent visits. My sibling finally visited today and said that it takes the life out of you. I just said that I would like to be visited in my final moments and that I have been caring for and visiting my parents for many years. Then I thanked him/her for coming especially since my parents asks about them frequently. I thanked them again and said that it would be good to visit more frequently.
I always think that I will sleep soundly in how I have managed this. I do feel that my sibling will have regrets in time, which I do not want to see as that is a tough road.
There are no re-dos, so work on being the best person you can be.
We are not put on earth for ourselves, but are placed here for each other. If you are there always for others, then in time of need, someone will be there for you. 

Read more: https://www.wisesayings.com/being-there-quotes/#ixzz6uPmiIgms
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Hi. I too am going through a dying daddy with dementia. I don't think you are terrible at all. My dad went into hospice Wednesday before Thanksgiving this year and I went to see him the next Monday. After I saw him so NOT like "my hero" I'm also so depressed & I'm crying at a drop of a hat. My daddy is my every thing! I would love to be with him every day until his last but I would also want to have memories of the way he was before. I have asked the same question about if I'm wrong for wanting to remember him, not the way he is right now. Btw, he is 90 yrs old & I know he has lived a rich, wonderful, full life & he is surely tired, but I just don't want to let him go.
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Dear Lookin4hlp: I am so very sorry for your loss. Sending condolences.
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Sorry for your loss.
You are one of the best caregivers ever! ❣️
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Keep the fond memories of the times you shared with your dad. To me you went above & beyond the duty of a daughter. You're not horrible, but a kind, loving, caring & very responsible person! It's very hard to see your loved one in the last few days of their life & people deal with it in different ways. Be kind to yourself & don't worry about what others say. 🙏
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Lookin4help, I am so very sorry for you loss. It is so hard. Take all the time you need. Grieving the loss of your father is so hard. I am so truly sorry. Know in your heart ❤️ you did everything right. You did everything just the way your father would have wanted you too. I too saw my father dying of cancer. It is so hard to watch. But I don’t see that image anymore because I brought out pictures when he was alive and happy. Bringing out pictures when he was alive will replace the end when you saw your father. It will take time, that was one image. You have a life time if pictures you can look at over and over and show your daughter. Shedding a tear now thinking of you. Know that you did everything right. Your dad would have been very PROUD of you for everything you did!! Take care, be gentle with yourself.
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You're not a bad person or even a horrible person. I know several people that just can't see people decline in health on a daily basis. One of my mother's best friends couldn't even see her in the hospital her last few days on this earth. It doesn't mean you care any less. I like to think it just means you want to remember them as the use to be....
Illness can be a lonely thing to go through so make sure to at least call them if possible.
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Hi. I was surprised to read so many tell me they think I have to force myself and go... and then ask how I think my mother feels...I appreciate the comments saying I have done enough and that I’m not horrible for not sitting there and going through this all over again with him. One thing that is important is my health also... I am raising a little girl by myself and my mental state is important. I’ve been having some heart issues lately and I hesitated to sit and stare at my dad dying and listening to my mom complain when she has so much help she barely has to do more than sit with him. My father passed on Friday. Hospice told me he had days so I went and sat with him. He passed away 5 hours later. I cannot get his image out of my head... it’s not a good image because he was very thin and his mouth was wide open from the morphine. He actually needed very little morphine and he passed peacefully. I do not think he knew I was there....being there just left this horrible image in my mind and I can’t picture what he looked like when he was healthy. Now I’m giving my dad his military burial and handling things the way he always wanted. In retrospect I don’t regret not seeing him for a few months because I spent that time with my daughter which I normally would have left her to be with him. My dad loved my little girl and he always told me to make sure she feels love always and is given all the tools to flourish. I know he would have wanted me with her instead of sitting and mourning. Now is when my mom needs support and I’ve stayed the night with her and been there. This weekend I will sleep there with my daughter. Now is when my mom is in need and I’m here to help... I do not regret how I handled it.
again thank you to those who said that I’ve done a lot... and I don’t have to force myself to sit somewhere that would break me down. I never wanted to have him pass without me there... I just didn’t want to sit and cry for several days... I was there as I intended... at the end. I am 46 and never failed my father... I was in-depth and involved in every daily decision and how he was. I knew so much that I could tell you how many diaper changes he needed every single day. I did my part and I believe I did more than most just wasn’t physically there for a few months during this pandemic. If I had fallen into depression... what good could I be now? I couldn’t give him the burial he wanted and I couldn’t raise this little girl right that needs so much attention at this age.
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Isthisrealyreal Aug 2020
Lookin4help, I am so sorry for your loss.

May God grant you grieving mercies and strength during this difficult time.

You did the right thing for your dad, don't let anyone tell you different. Your love for your daughter is his legacy.
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Do you ever about your mother how she feels.
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Yes I think u need to be stronger than that. Be there for them no matter what. One day a week is not much to ask. My dad died after 5years helping him everyday and I would do it again if I had to. By the sound of it you may need councilling too
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Lookin4hlp Aug 2020
everyone is different in what they do and what they are willing to do. You think everyone has to do what you’ve done otherwise they aren’t “good”. I did a great job with my dad but I also have a demanding job and a small child and I am a single mom. If I was the one taking care of him for 5 years there would be little left after he went. I managed to get the help and also maintain my life... he’s gone now and I regret nothing. I worked hard in my life so I could bring in caregivers that were skilled to care for him. I did everything panning-wise. My dad would never want me to lose years sitting there. Everyone Id different... don’t assume because someone doesn’t do what you did that they need counseling. I was there for hours the day he died... I’m 46 years old and up to the lockdown I was sitting in his house every single sunday... all day just spending time there. I did it when he was healthy too... I know my dad more than my siblings... I helped my dad with his work when he was healthy, I worked in his restaurants without complaining... I supported him and loved him and he knew that. I actually DO NOT need counseling because I took care of myself mentally so I could be a good mother, so I could work and provide for my daughter, so I could be strong and give my father the burial he wanted. I am not tired and depressed and unable to do all this... or to be there for my mom now. What good would I be right now if I was exhausted and depressed... I did the right thing and was looking for support not a recommendation to see a psychologist
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You are not terrible but my feeling would be to do something One day you will wish you had. This is that time. It will be sad but so loving for both of you to hold his hand and for you to be that close to him. I wish I would have had that opportunity but my Dad died in a hotel, while on vacation, in Austria with my mother there.
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Please go see them. I can't imagine how your mother feels.

Sometimes we do things that are uncomfortable because they're the right thing to do.
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My personal insight . Something I truly wish I did differently. I watched my son die in a room with about 8 other people watching . We were a fractured family. It took about 45 min after the tubes were taken out for him to pass. There was not one word spoken . How I wish I was able to forget the other people that were there and reminisce aloud the things he did as a child, as a toddler and a little leaguer, a high school football player , the cars he had accidents in, The friends he grew with , how well he played golf , his children and so much more . He and I were not very close but I still feel that he might have been able to hear as he was passing over . It’s been 13 years and I still wish I had done it differently.
This is just food for thought ...
I suggest you spend a little time and
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First of all, NO you are not a terrible person

I will say that after my dad died of ALZ I wish I had been with him more prior to dying. I was there a lot but just could not deal with it all the time
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When my Mother was under hospice care, her experienced hospice nurse told us she was dying and only had days to live. He was absolutely right about the timing. It was a blessing to know so my family could arrange to be by her side at the end.

If it's too painful to make regular visits now, please talk with the hospice nurse. She or he recognizes the final days of life. Make certain the nurse calls you so you can be with your father when he passes. You will have a sense of closure and no regrets that you weren't with him to hold his hand at the end.
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Imho, you are NOT horrible. You are a superlative daughter!
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Lookin4hlp Aug 2020
Thank you for saying that.
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Lookin4help, you are so young yourself, 46 is young. You said you goodbyes over and over to your father when he was awake and able to see you. You said he would stare at you and said an angel came for him. You said your goodbyes. He doesn’t know who you are now. You said your mother complains a lot and you have your reasons for not seeing her right now. It’s ok. You don’t have to see her. Your not a horrible person if you don’t go see your mom right now!!
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Lookin4help, don’t let anyone GUILT you or make you FEEL BAD if you don’t go. You said this has been going on for the last 10 years. You said when you use to visit him you would get so depressed that you couldn’t function. You already said you would be there at the very end. DON’T GO! It doesn’t make you a horrible person if you don’t!!! Talk to a therapist to get you through this. A therapist will do teleheath calls. Over the phone or computer. You don’t even have to leave the house. I’m sure a therapist won’t think your a horrible person if you don’t go.
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Lookin4hlp Aug 2020
Thank you for your comment. He passed and I was there the last 5 hours. I did the right thing because I’m strong enough to be there for my mom now.
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If you had kids, and were dying, how would you feel if they never bothered to see you -- and if you think, "I would not want them to see me like this" -- your perception would radically change if it were actually happening. I took care of my mum for decades. Literally. I was with my mom during her last breathe and her eyes were on me. She did not feel alone and scared, and passed away very peacefully. She died surrounded with all the love in the world.
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Lookin4hlp Aug 2020
My dad passed. I was there for his last breathe. My dad knew I loved him... I showed him that from when I was little. I didnt necessarily have to be there during his last breathe to make him feel loved.... I did that when he was conscious. I do not regret anything I’ve done or not done.
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I think you sound like an amazing daughter, not horrible in the least. I doubt very much that your presence or absence would be noticed by your father. Don't let anyone pretend that such a visit would be for him. It would not be. Last visits are tricky. The most important thing to consider is why you would do this. Who benefits from the visit and how? Does your mother count on your presence, has she said so? If not, it is all about you. You have done everything you could for 10 years. It may now be time to care for yourself for a bit. Do what is good for you.

I am not a fan of death bed visits unless they serve some valid purpose, never just to check that box. I prefer to remember people as I knew them in life. I remember my father as the vibrant, active man who loved and protected me well into adulthood, I would not want that memory sullied by a view of him as a gasping shell of his former self. He died suddenly and unexpectedly of a heart attack so I was spared having to make that choice concerning him. I was there for my Aunt and do not treasure those last days and hours; I treasure the memories of her active life when her essence was strong and she was really herself. I was there because she still knew me and took comfort from my presence, not for any last goodbyes. I arranged for and was with her when she received the Last Rites, so she would know she was not alone. Not for me, for her, because she had no dementia and knew me and cared. What I did for me was take her sister to our favorite cafe and have quiche and a glass of wine--a favorite past-time for the 3 of us. Various other relatives have passed without my presence at their bedside in their final days. I have not regretted it one bit. As I said, I prefer to remember people at their prime, not at their death. They didn't request me and I felt no desire to be there to check some box in other people's minds.

As I said earlier, do what is best for you and don't be overly concerned by what others may think you ought to do. Each person lives and experiences life slightly differently and needs to be free to experience death in their own way as well. Grieve as you must, and shake off any guilt that tries to sneak in on you. You have nothing to feel guilty about.
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Lookin4hlp Aug 2020
Thank you so much. He passed. I was there at the end but most importantly I was there for my dad since I was little... never left him and never hurt him. He knows I loved him because I showed it when he didn’t need anything... I loved him when he was conscious and even though I was there when he died... it was when he was conscious and healthy that I showed him my love.
I appreciate your comment and support. You’re sweet and you made me feel good.
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Well, don't see them then. That's up to you. Your decision--but once they die you won't see them ever again. It will be too late.
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There are those that can and there are those that can't.

For whatever reason there are those that cannot be by the side of their loved ones as they pass on to the other side. That is just the way they are made. It dos not make them terrible folks.
There are those, like me, that can, and have, been by the side of loved ones as they passed on to the other side.

We both suffer but it does not demean the ones that cannot be there.
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Without going in to great detail, if I had it to do all over again I would force myself to make a visit. It’s been 15 years since my father died and I still feel that I made a mistake by not visiting. Why subject yourself to feelings of regret for the rest of your life? It will be very difficult, but force yourself to make one visit to say goodbye.
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No you are not horrible. I did not want to see my Mother die. I did not want to see her buried. We both agreed to a direct burial before she got sick. When it occurred I saw her in the early afternoon at the NH then I got the call at night. The next day I made the burial arrangements. Although that was several years ago I still have not seen her grave. I remember her by walking by the hospital she was last in and looking up at the window of her room; thinking she is looking down at me. She was buried next to my Father. Someone told me that my Father’s gravestone was not there. (If so, it was stolen.) I do not want to know. I did not purchase a gravestone for my Mother because I feared that it too would be stolen. My after thought, is that I think I remember my Mother better as a living person rather than her death.
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cetude Aug 2020
except it would have been meaningful if you were with your mom when she was dying--that would have given her a sense she was loved. But I suppose some people are not that close to their parents they can avoid the unpleasantness. Just remember that when it is time for you to die. I took care of my mom for years--I did everything for her, and she died with me beside her. She looked straight at me as she drew her last breathe. She never needed a single drop of narcotics because she died in comfort and security. I was with her at all times. Even the hospice nurse told me she never seen a patient as peaceful at her dying as my mom and we never needed the comfort pack.

After a person dies, it all ends. Graves, gravestones, etc., are of no use. I got my mom cremated and without ceremony--I paid homage to my mom every single moment she was alive, and she died in peace. What a person does for the other while alive is what matters. After death, the rest is just meat--because when they die they are forever gone.

So you let your mom die by herself. She was probably thinking of you. I'm glad your feelings were spared.
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