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My dad has been in memory care for over a year. He has really declined over the past 5 months. It's so hard. I am an only child and I keep most of my emotions over this whole thing inside but today I am alone and crying for my dad. I am weary of people saying that well, I am lucky that he is alive because, unbelievably, their dad has already died. As grown children we prepare ourselves for the eventual death of a parent. But this dementia stuff is just more than I bargained for. I mean, eventually I am still facing his death. It's not like this is INSTEAD of his death. It really is the long goodbye. When a parent dies you can grieve and move on. Every day my heart breaks for my dad and this could go on for years.

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Upstream, my heart really goes out to you. I'm so sorry you're feeling low today. And yes, this is the longest goodbye ever. I really have nothing that would probably help right now. But I just wanna let you know you're not alone in a black void. I hear you and get what you're feeling. I too am loosing my Mom. Slowly. She was as efficient and on the ball as anyone I've ever known. Now, not so much.

Hang in there Sweetie, sending you lots of love and strength.❤️
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Upstream, you have my empathy. In a very real way our dads have already died, but it's not yet final and so we can't move on. A few days ago ago in this forum, She1934 posted a poem she wrote about her husband titled "The Long Goodbye." I don't know if it's appropriate for me to copy and post it -- if you can find it, it'll probably make you cry even more, but it will at least let you know, as Pepsee just said, "you're not alone in a black void." Best wishes.
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I also have no real advice which could help, other than saying I went through this for two years with my own father. Perhaps even fortunate that it was only two years, but it was and is hard, as he passed, and I in some way know what you are going through. It is not fun. Prayers for you
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Keep coming here for support my dear. We are here for you.
Crying is good. It stops you cracking up so much.
I send you support and love.
(((HUGS)))
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yeah I don't understand the "at least you still have your dad/mom" thing.
I guess they don't know what else to say...
I had someone tell me that too. but when they get to that certain point of dementia, its really just devastating each passing day. that blank stare :( etc ... by the time my dad passed away it was just a relief. (hope that doesn't sound bad)
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I'm so sorry, Upstream. Losing a parent to dementia and then losing them at the end of their life is truly losing them twice, and anyone who hasn't dealt with dementia in a parent or hasn't been a caregiver has no idea how bad it can get. They say things that they think will help, and I truly believe they mean well, but ....well, we all know how that goes over. I had a "friend" tell me the day that Mom passed away, "It sucks to be an orphan, doesn't it?" - because her parents were both already gone. How someone thinks that's an appropriate comment to someone whose parent has *just* died is beyond me.
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Thanks everyone! I made it through yesterday, and went to see dad this morning for about an hour. He's got pneumonia. It's been about 3 years since it was crystal clear he had dementia (before that, it was a hopeful "maybe"). He's been in a memory care facility for 1 year. I wasn't expecting him to decline this quickly. Part of me is hopeful that it will end before it drags on for many painful years. I know he would not want to live this way, he always said so. But then I feel guilty for hoping he might go quickly :(
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Upstream I am so sorry. It is a heartbreak many of us are experiencing. People say the worst things and it makes me remain silent about it. I also feel the same as you state about being hopeful it will end before it drags on for many painful years, feeling guilty for those feelings, and knowing your parent never wanted this. I saw my parents yesterday and can't shake my feelings of despair. I know they would hate that they've impacted me like this. You aren't alone.
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Upstream, next week will mark a year since my mom has been in her nursing home, and while I'm usually not down, this past weekend was a long blue one for me. Holidays don't usually phase me, I get through them and keep busy. But it bugs me that my brother has never come to see her and my sister and niece only a few times. When I ran into my sister at the grocery, she didn't even ask about mom. It's as though she's already dead to them. I see mom daily at dinnertime and am glad I can feed her dinner. She still laughs and seems to know me most of the time and can tolerate my jabber. But on the drive home most days, I find myself asking God to please take her tonight.
(18)
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I too feel like I lost my mom twice, first the long worrisome decline, and then she passed away. I miss her very much every day, but don't miss the rough time she had to go through at the end. It helped me to pull out photos of happier times before she declined, to see she had a long life and good times before the illness. Please remember to take care of yourself during this time. Even little things you do for yourself like a good cup of coffee, watching birds, an enjoyable book etc. help. The very little good things add up.
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You, upstream, are not the only one that feels that way. No one wants to live like that. I used to wish that mom would have a stroke or heart attack that would shorten everyone's suffering. That didn't happen, she had been diagnosed with Alzheimer's 12 years before she was finally released from this dreaded disease.

There are many that feel the same way. Mom even asked me to help her to die early in her disease. There is a thread about wishing they would die. Perhaps it may help you not feel so alone, because you are not.

https://www.agingcare.com/articles/a-common-caregiver-confession-i-secretly-wish-my-ill-loved-one-would-die-139321.htm
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What can I say?

I have been going through this with my husband for almost ten years and it is the same thing: I lose him a bit more every day, day after day after day after week after month after year.

Recently I stood back from the situation and realized that I cannot end my life with him. I have to live. So, while I continue to care for him, I continue to live: to work on projects, to get together with friends, to find joy.

I wish I could tell you that I was traveling but this lifestyle is very confining. I am going to visit my mom 500 miles away next week and I think it was easier for Eisenhauer to plan the Normandie invasion. I am exhausted and have not even left yet!

But, so it goes. Long and slow, first with my mom and now with both of them. Long and slow. Thank goodness we have each other here to learn from.

So, I cannot offer you much. Only understanding, and please do not forget to live your own life!
(11)
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You have a lot of understanding friends here. I say it is a slow death and my dad just wants to go...he tells me all the time. He’s tired of his life like this. I tell him "I know, daddy" and empathize. If I were in his place I would be ready to die too. Now that I’m a caregiver of my dad with dementia I understand the pain of others going through this. Friends who haven’t, often say thoughtless remarks and platitudes. I just shake my head at their stupidity and go on. Dementia is worse than a cancer diagnosis. My mother had a brain tumor and died within 4 months. While that was devastating and I miss her like crazy, I think living for years with dementia is much worse. I too hate seeing his decline of a once strong, capable and smart man. It chips away at me. Know that you are not alone and you can talk here anytime.
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Hello Upstream! I am in the same season as yourself. Please remember (as I remind myself) it is a season. My dad and I are in our “long goodbye” season now. I don’t live in the same state as my dad; which causes me to travel a lot to support him in this process. Both of my parents are still living and I have 3 siblings but all of the decisions and management of he care has fallen to me. Again I live and work 4 states away from my parents and I have a family and a job. Everything about this is hard. However I am getting the help I need to navigate this season. I am an advocate for therapy.i don’t know about you but I don’t see a spring chicken when I look in the mirror. This is a long goodbye but please don’t say goodbye to yourself in the process. Get the help you need and know that this too shall pass. Please check in and know people care. I care. The best to you! Hang in there!
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Upstream, do not add guilt to your already heavy load. Hoping for a quick end to Dad's journey is only hoping he soon finds the peace and comfort he deserves. You deserve it too and there is no shame in that. You have done all you can to honor your Dad in caring for him. Know that you are not alone in your conflicted feelings, and try to accept them as they come. Do you have hospice care for Dad? He may well qualify, considering his recent rapid decline. Hospice is wonderful, not only with physical care, but in providing a chaplin to provide spiritual support for both of you. He can receive hospice services in the nursing home. They are very caring at guiding you through this difficult time. At least contact hospice; it is paid by Medicare. Blessings to you both.
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Thanks to all of you who are going through this horrible situation, I do think it's just a bit better to be able to share our bittersweet feelings together.

It's time to begin another busy day. I am so lucky to have my husband, who helps me slog through the emotional bog.

And, thanks to all of you.
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I know how you feel, both Upstream and the other people who posted. About 10 days after my mom died of Alzheimer's, my husband and I were out running some needed errands, and I was hungry and tired, so we stopped at a local restaurant for lunch. I told him there's something wrong with this: My mom died 10 days ago and we're going out for lunch. He said, "You've been mourning your mom for 5 years, " (the length of time she lived with us, when Alzheimer's was in full force). Although I never thought about it that way, he was right. My mom, who was bright and articulate, became someone who was afraid someone was coming in a second story window to steal her coffee, due to paranoia that sometimes accompanies the disease. In a way, it was easier to let her go, than if it was an unexpected, sudden event. We all just have to hang in there.
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Both parents with dementia. Over 4.5 years. I was so overwhelmed with all of it plus family drama. Now I just want to squeeze them, and actually smell that horrible smell. It will play out how its suppose to. Hang in there, and my blessings go out to you. I am actually crying right now.
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By the way, this website got me through SO MUCH.......
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Thank You All. Each comment and story help us to remember that we are not alone in this long journey. Sometimes I feel Crazy and think please let this be over soon. Mostly I am exhausted. May you all find a little joy somewhere today. Grace and Peace.
(7)
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I went through this with my Husband for 12 years. He was easy to care for and compliant so thankfully I was able to keep him at home.
What I did love was looking each day for some bit of joy, the way he would try to "sneak" my breakfast when he though I was done. (I would leave my bowl with a bit of yogurt and fruit and while my head was turned he would grab the bowl and eat what I left!) Listening to him watch the Cubs game. While I have no idea if he was reacting to the game or just the excitement he picked up I have no idea but he seemed to enjoy it.
Look for the little things that may seem unimportant now but in a year or so they will mean more.
Go for walks, hold hands. continue to do the things that you always enjoyed before. Talk to him about your life, what you are doing. You never know what gets through. If nothing else I am sure he loves hearing your voice.
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Dear Upsteam, I am a caregiver for Alzheimer’s and Dementia loved ones. I hear the stories and see the struggles that adult children have with their loved ones decline. I always tell them to wait for those sparks that let you know they are still there!! Play with your Dad. Get out the cars aor LEGO toys. Play and wait for the laughter!
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hi i already lost my mom from it ..she went at home .but i say try to still do things with him often as you can .there are good days & bad my mom was a trooper to the end i guess i will grieve one day but so far i stay so busy i do not think much of it but she had the best care anyone could give her so you can try to remember the good times as much as you can & when you get them the good days now ..i hope they find a cure it is not a good way to end his life well good luck
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I know how hard it is, and my heart goes out to you. My mom has been in a care facility for almost 3 years. Lots of tears have been shed. I've been seeing a therapist and have cried there as well. Something for you to think about. It has helped me.
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Upstream
Don't know if I can make you feel better but can try to make you feel that you have others here who can empathise.
I am in similar situation. My Dad age 92 in care home since October last year. He has some form of dementia. Like yours decline has been rapid. He is completely unsettled. Never watches tv which he loved before. Just sits there and complains about how much he hates being there, complains about staff and food. It's all lies and very exhausting. I am an only child too so it's hard. Complains about it all the time. He says he's leaving care and I am so worried that he tries. He is capable of trying any lies to get what he wants. He asked one of carers to marry him . When she refused he wrote a note with his old address and phone number on it asking her to stay with him. Being nasty to me cos I won't do as he asks. Hope its a phase. Don't know how long I can go on like this. Haven't been to visit for a week. Self preservation.
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Upstream, I am so very sorry. None of us should ever have to go through this. And I feel for those, who will. I completely understand and agree with you. I lost my mother to dementia not even a year ago and I am still struggling. In my case, I lost my mother to abandonment when she gave me away around the age of 4. That original grief always stayed with me in some way. We reconnected in time. Then I became her caretaker when she was diagnosed with dementia. I always wanted a relationship with my mother and if this was all I was going to get to get close to her at this point in life, I accepted it. Compassionately. But there was grief again, in the realization that I was losing my mother all over again. And as you say, slowly everyday. It was in many ways a sadder and deeper grief. I tried to use that time as much as I could to make up for what we lost earlier in our lives. The inevitable final loss was always lurking in the future. My mother lived like this for 5 years. In her passing, yet another loss, and more grieving. I am still grieving in my own way. I feel for you. My heart breaks for you too. I am so sorry. Please take care of yourself.
(4)
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I know what you mean. I am an only child and my mom has dimentia with other mental illnesses bipolar schitzoaffective disorder. I had to get guardianship over her. She is only 73 yrs old and physically fine. She is blaming me for being in the nursing home. When I go to see her she doesn’t want to see me. In the last hollered screamed for me not to go back She tells lies but I guess she really believes them It is hard being the only child and it’s a different kind of grieving no one knows unless you experience it. They are physically here but in so many ways not the parent we knew. It’s the hardest thing I’ve gad to go through. We used to have a great relationship. That is pretty much over and now I feel responsible or to blame she is in nursing home. She says she is getting out soon to her sisters. And to my daughter. Everyone agrees she needs to be there. I truly feel like she would be dead if she hadn’t gone in there almost 2 years ago. But she’s not happy or has not accepted being there anyway. There’s no way I can take care of her in the state she is in. Doesn’t take her meds unless she wants to. But anyway I totally understand what your saying. It’s so hard. Didn’t mean to make this about what I’m going through But I do understand
(3)
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Upstream, you are not alone in this. Many of us are living our own version of seeing an elderly parent die a little more each day. I'm living that with my mother, and it's tearing my life apart. I didn't know it would be this way.

I used to wonder how people could lose an elderly parent and bounce back the next week. Now I know why. It's because they actually lose their mother or father long before the moment of physical death, have already worked through the grief, and see their actual death as a moment of relief and release.
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There are certainly things worse than death. The people who you were "lucky" probably didn't know what else to say. They probably thought it was a comforting statement because they only saw it through their eyes and their longing for their lost parents. Please try to forgive them. Yep, with dementia we are in it for the long haul. I get comfort by coming to this website daily.
(3)
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Many comments. Well, some are right on and then the advise sometimes is hard to understand since we "haven't walked in the shoes of others". My wife has been in Assistance in Living now over four years and the dementia is still on that slippery slope. We play Triominos almost daily. She likes it and so do I. BUT, the situation is such that if she had cancer I could see an end. BUT, the many health issues will not take her life. God is in complete control of our days here on earth. During that time we have a job to do and that is to pray, read HIS Word and trust HIM for the help we as care partners need daily. I trust in the living God and from a human standpoint it is sometimes overwhelming. God will never leave me nor her. She has a strong belief in HIS Word and knows that as well - how I praise God for that!
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