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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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Focus on how you can make him better. Use the internet to find ways to treat his illness and not conventional methods because that treatment method limits itself. Seems you feel, with his dementia, you are rolling with the punches instead, of helping his brain function better. Plus, those we are close to, you are never prepared for the death.
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You are so right in every word you said. my heart goes out to you. to take care of someone who is dying is the slowest most painful death for your parent and for a part of your heart that they will take with them. I know how you feel as I did it for both of my parents whos health was declining at the same time.
after a period of time I realized that they could no longer live in their home alone. my husband and I agreed that I would move in with them to help them out.
four sisters and not one agreed to help take care of them. they were out of the picture. They never called, visited, or even came to their funerals. their excuse was they had their own families to take care of.
It was a very long and painful process until they left this life for a new journey. The pain will never go away but I cherish the good times that I had with them
throughout my life.
I miss both of them deeply.....

I lost my father first and three weeks later my mom passed also. my heart was
and will always be broken.
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I can empathize with so many of these comments. My mom died of Alzheimer's about 5 1/2 years ago. She had it for about 5 years. About 10 days after she had passed away, my husband and I were doing some long-neglected errands, and we stopped for lunch. I had a coupon for a local restaurant. I told him that there was something wrong with this: that my mom died 10 days before and we were going out to lunch, and he told me, accurately, that I had been mourning her for 5 yrs. People really don't understand the dynamics of this disease unless they have been faced with it. But, I guess it's not their fault for not understanding, because I didn't really grasp the severity of it, until we were faced with it.
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this thread is my "favorite" thread - not that it is a pleasant issue of course, but whenever it emerges again after several weeks I re read through all of it and it sort of summarizes all the angst, grief, sometime victories, et al that go with a situation like this. Given this happened to my dad earlier in the year culminating in his passing at end of April, it has provided me a lot of comfort. Not that others have to go through it too, but in knowing its often part of life.
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Upstream:
I can relate to you 100%. In the same situation. Except my 91 yr old dad is in rehab and skilled nursing (if that's what they call it) after a gall Bladder operation and infection. It's a nightmare. Our health care and insurance industry is the worst. Insurance rep came to see him and apparently has given him only has 8 days to get better. If he doesnt improve, they make them leave. This is Florida!! The biggest population of elderly but no decent care to be found. Most of the dimentia care facilities are full so we have no idea what we are going to do. He wouldnt want to live this way, I know that. Such hard times! People dont have any idea when they say "at least you still have him". We don't have them. The grip of dimentia has them!! It's watching them slowly be torchured.
I hate that this has to be how his life ends. And like you, he could go on and on. It's awful! And there are no answers but to hope and pray they close they're eyes one day and are no longer in pain.
I feel for you so ♥️
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I am in the same boat, my mom had an active life and seeing her decline now and suffering in the facility its just a big big burden for me, I dont understand why god is so heartless....
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Dear upstream, we are all too familiar with this long goodbye, some like me have already lost their loved one to dementia (my mom) and others are still struggeling with parents or loved ones suffering with dementia all are in different phases of grief...most just want it to end and to have their loved ones at peace. Ist wrong to wish for them to die? No, I think not! We want their and our suffering to end and we do this with love. My mom would have hated to know what she had become, thank God she did not know...my Dad and I cared for her at home until she died and to be truthful when she died I only felt relief...for all of us. I hope that your loved ones journey will end soon and peacefully for all of your sakes! Blessings Lindaz.
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Dear Upstream,

My heart goes out to you for I know what you are enduring. I lost my Mom just 10 months ago to end stage renal failure and stages of dementia. It was a very long process of many years, being in Assisted living homes, hospitals and so much more.
The hardest is seeing how they used to be, so hold on and treasure the memories. Hold onto the pictures, special writings, books, places and more.

If you are close with a family member or friend than stay in contact with them. Take time for yourself, spend quite moments, by looking in
to the treasures....stay in a support group if you can and most of all Pray!
See all the reason it made it harder is the division with my siblings, so with the strength of the Lord and my quiet moments and friends I’m pressing on! It’s not easy....

Psalm 62
Let all that I am wait quietly before God,
for my hope is in him.
6 He alone is my rock and my salvation,
my fortress where I will not be shaken.
Blessings,
Stay
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Upstream, No. No guilt, you are hurting for your dad. It's not your fault. As a former memory care caregiver you said it yourself, "he didn't want to live that way". Please, Honey, and I am walking a very thin line here since I've just joined by saying it. Please don't let yourself go there. I've lived what you are living with, I began at age 8 with my 69 year old grandmother. I've worked in the field all of my life.
No one wants to see our family member suffer mentally, physically, or suffer with embarrassment.
Ourselves feeling lost and not knowing what to do next in any given moment,
Or the loved ones who are "walking up to the line", fully knowing that their minds - watching the frustration.... "something's wrong, but I can't put my finger on it, dammit!!".
It's ok to feel all of what you're feeling, it's the disease, no need for guilt.
As Mr. Smith said about Mrs. Jones passing said to me, "how sad". I said, "no, she's free".
There's no wrong in not wanting your dad to suffer.
Children of dementia suffer burnout as well. Please no guilt.
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Hi Gladimhere, yes the same kinda thing happen to my mother. She had to have an emergency op to save her life!!....we felt we had no choice. Mums dementia wasnt a major concern at the time but after the op it became full blown within 6mths. I was just trying to express that even though you talk to people/friends xtra (mayb for years about yr experiences with dementia) they still dont understand the gravity of the disease...it amazes me that people think they just go a bit 'loopy' its sooooooo much more than that as we all have experienced. I think TNtechie put it perfectly about when the real person appears is probably the hardest.I would feel myself desperately trying to keep her ...like trying to keep her from drowning......but i could never!
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All of our experiences are different but yet the same. We have compassion for each other even though our paths are different. We still all.support each other.

Rosmus, friend's mom did not pass the mind test? She must be developing dementia! Anesthesia will hasten and intensify dementia, many times it is permanent. I saw this happen with my mom at 81 following a hysterectomy due to cancer. Hindsight tells me she should not have had the surgery because when we are elderly cancers tend to spread and progress very slowly.
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I can certainly relate...unfortunately! My mother passed away 7 months ago from vascular dementia...the most horrific disease to witness and be apart of. I nursed my mother right to her final days, with the help of my sister who left her job and my father who is in his seventies. We couldnt trust any of the nursing facilities in and around our area....we would get outside support who didnt know how to deal with her as the disease was taking over so we couldnt rely on them either. The doctors..well thats another story...lets just say ive lost all faith in the medical profession when it comes to this disease!
But i want to contribute something that happened recently to me in relation to people not understanding! When my mother would have "episodes" and there many! I would tell a friend about them just to defrag presuming she undetstood as she sympathised with me...this friend also looks after her elderly mother but she has all her mind regardless i sota thought she knows the relationship..the closeness.....mother and daughter. Recently her mother ended up in hospital needing a life changing op but didnt pass the mental test. We had a conversation about the op and she said to me that she really wanted her mother to have the op and if she came out a bit demented she would just deal with it. I got home aftet this conversation and i said to my hubby...."people really dont understand what this disease is all about" i realised that if u dont live it u dont get it!
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Listen to Dr Myles Munroe's sermon on Maximising Your Faith on Youtube. Hope you find strength and encouragement as you listen and grow in faith in Jesus.
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Upstream: I'm hoping that this scripture verse can give you some measure of comfort. Please return to this forum often as we here lift each other up, as it is God's Plan.

2 Corinthians 5:6-8 "So we are always of good courage. We know that while we are at home in the body we are away from the Lord, for we walk by faith, not by sight. Yes, we are of good courage, and we would rather be away from the body and at home with the Lord."
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Losing your parent to dementia is like losing your parent to a long, painful bout of cancer. People should not ever say..Well at least you still have your dad. It is not that way.
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The sheer number of responses tells quite a story... So many people are on this journey for a loved one, varied both by length of time and types of decline, but the same in its sorrow. Mine was my mom needing support for almost 10 years but stable enough in assisted living; followed by abruptly increasing declines and multiple moves for help over 2 years, finally nursing home for last 15 months and my presence at every meal and then some... I was her mental stabilizer in the face of anxieties, fears, distrust and some anger/combativeness until meds were finally adjusted correctly. And her body had some incredible health so it could have gone on longer. When she got pneumonia, she was gone in a little over 2 weeks. She was 94. One feels her pneumonia could have been prevented, but wait, was that not a blessing? See the conflicted feelings? I was running on near empty and just getting up to begin again day by day. Not present for other family on too many occasions. I too trust the Lord and had to feel He knew best for us both. So my eventual grief at her passing seemed mild, yet, all the many reminders of what I did for her for so long can reduce me to tears out of the blue. It has been 10 months.
What all the many experienced caregivers here say is true. You don't know how to go on, yet you do. There are sweet tiny moments in there that come back to you later and you thank God you were able to do what you did for them. You remember the person they were when vital, so much more after being released from the daily disease of it.
So much good advice written already. No feeling is really wrong to have when you are doing just all that you can at any moment. If you take a break, you need it so much before you even thought to take it. No guilt required. Ever.
You will be rewarded. I believe it. I'm speaking eternal reward, but I also have one in the here and now. A beautiful grand baby 6 months ago. Mom would have loved that! And she passed before she arrived. But I have the time to be with the baby like I never would have had she been here! Bitter and sweet. Yes, I trust God's hand in it.
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Wow, I so appreciate all of you reading my post and responding!! All of your words have meant so much. I am sorry there are so many of us that are grieving or have grieved in this way :( One thing I have learned that several people mentioned was to live in the moment. I used to be a person that worked and saved for that "someday". Now I try to seize good things when they come around, knowing the future is not guaranteed. I have learned patience. It is sad that our bodies more and more are outliving our brains!! The medical community has figured out how to refurbish the body continually but when the mind is gone it hardly matters. Something needs to change and I don't know what. Thank you all for your heartfelt support!!! I am lonely in this journey and yes I've been thinking of going to some counseling. I was attending a dementia support group but the meetings were so sparsely attended that they stopped. Hugs to you all and thank you :)
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Upstream, its very normal to want a loved one's suffering to end. Whether cancer or dementia, when someone you love is in unending pain and you cannot help them, it is a special kind of hades. My father's vascular dementia has been advancing for over 20 years. The worst was when he went through a stage of great anxiety. Dad wouldn't take the anti-anxiety meds consistently and he would have awful panic attacks. He was so afraid, shaking, often crying and trying so hard to get a hold of himself. I would wrap my arms around him and rock him and tell him everything would be better soon and then get him singing hymns with me like we did when I was a child. When things settled and I could leave my parents' home, I would go home and cry buckets. Dad's existing in SNC now, taking all his medication on schedule and so angry with everyone about everything.

Guilt goes with care giving too. Four years ago, Mom called saying my Dad thought he was having a heart attack. When I got there a couple of minutes later from my house down the street, he was upset, breathing a little heavily but saying the chest pains had lessened. Dad had never had any heart problems before but his age, high blood pressure history and sedentary life made him high risk. On the advice of the dispatcher, I gave him several aspirin while we waited for EMTs, put his feet up and concentrated on getting him calmed down. When the EMTs got there, they found his vitals normal and didn't want to transport. I basically forced a transport by pointing out Dad's prior symptoms and risk factors and implying if they didn't transport and anything went wrong I would be coming after heads. Dad coded in the ambulance on the way to the hospital but was revived after being down for almost 3 minutes. I've wondered more than once if I'm responsible for Dad's current suffering. I was the advocate for his treatment during that heart attack. If I hadn't insisted he chew and swallow those aspirin, if I hadn't insisted they take him to the hospital, if I hadn't pushed for the stent, if I hadn't been so focused on saving his body... then he wouldn't be suffering in mental anguish today. And if he had died and I hadn't given my best effort for his treatment, then I would feel guilt about that too. There are no clear choices and no way to avoid the guilt. Dad didn't want a DNR; he always thought that way, long before the dementia.

The one thing I can tell you is that as more of your father's personality dies in dementia, as he becomes less the person you knew and the new dementia person emerges, coping will become easier. Someday the dementia behaviors won't hurt anymore. What hurts is when the "real" Dad makes a brief appearance - only long enough to underscore all that has been lost. I was online earlier tonight purchasing the big box of Godiva chocolates for Father's Day. No matter how angry Dad is that I wasn't there sooner, he always likes the sweets.

I'm not ashamed to say my father's physical death will be the end of great suffering - his, my mother's and even mine. I both fear and look forward to that day. Everyone who has walked this path with a loved one's destructive disease will understand; many without that experience never will.
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God Bless all. Hardest thing I’ve ever dealt with.
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I feel the pain of watching your loved ones lose more and more of their skills each day and the guilt of hoping some other disease ends this journey soon. Yes, we lose our loved ones many times with this long drawn out disease that robs people of their very essence. Each stage of dementia they enter brings a new mourning period. Someone mentioned we all know our folks will die, but NOTHING prepares us for dealing with parents dying from dementia. I don’t even secretly hope my folks pass from something else anymore. I tell everyone that any quick disease or sudden heart attack would be a blessing and end a lot of suffering for all of us. If that sounds horrible, I’m sorry. Bless us all....
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I also pray for guidance and to have the best words to use, the best ideas to follow, and for strength. We are called upon to love one another and especially our parents. I need that mental and spiritual support for the inner strength to do this role well. Would the staff nurse have some ideas or even a chaplain who is used to end-of-life situations? For those of us who are doing this for the first time, this task can be full of emotional surprises or pitfalls. Someone who deals with this regularly may have some insights to share that would be helpful for us first-timers.
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I'm going through this same situation with my husband. Dementia takes your loved one away piece by piece, leaving you with only memories. It's a terrible disease, not only for the patient, but also the family. Everyone tells you hang in there, what other choice do we have.
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My heart goes out to you. I wish there was something I could say or do to make it better for you. I know exactly what you are feeling because I just went thru it with both my parents. my dad and I are/were so close. the pain and hurt, the emptiness that you feel for your dad at times is just unbearable. like you I held it in but at times I lost it. my parents both declined anymore doctors, hospitals etc they both decided to let god take over at home. they wanted to die in peace at home. I moved in with them and each day I looked at them my heart broke alittle more. its hard when you are the only child to care for them. its hard when you have four sisters that didn't care enough to even call for years at all.
I understand everything you are saying and all I can say is each night before I went to sleep I didn't think of the negative things I focused on the happy times of the day. the talks we had. the laughs and stories we told each other. once the alztimers/dementia took over it was even harder. dad passed a short time ago and mom passed three weeks later. I am not going to lie its the hardest thing in life to deal with, holding your dying loved ones as they took their last breath. its been just a few months and the pain is as if I lived it yesterday.
my heart goes out to you.
my attitude has always been my parents brought me into this world, stood by me thru the good and bad times and now it was my turn to do the same for them. and I did... and as much as it hurt me I would do it all over again if I had too.
be strong, see him, love him as much as possible and treasure the time you have left with him.
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Upstream: I'm asking our Heavenly Father to lift the despair that you are feeling. Go to the Lord in prayer and it will help you feel better.
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Upstream, This is so hard. I am attending a six week course for caregivers. Most in the class are dealing with family or friends with various dementias.
In the first chapter of the book, and in the class session the speaker emphasized that this is a new relationship with your loved one. The person you knew is not the person you are dealing with now. Our loved ones now have brains that are dying. Our old relationships are now happy memories. Our new relationship is completely different. The idea that is a new relationship with a very different person helped me a lot with dealing with my Dad. There are limited conversations, he is delusional at times. He needs more human touch, like holding his hand, hugging him. Of course I did not hold his hand before this since I was a child.
He does not know he is declining, so the sadness is my thoughts and emotions, not his.
My siblings are just figuring this out-I worked with dementia patients for 30 years. They are finally realizing anything unresolved with him will never be resolved.
I hope this viewpoint helps, I do not want to add to anyone’s pain. It has helped me a lot.
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I'm so sorry Upstream. I know how hard it is. My dad had dementia before he passed and I honestly think I was a lucky one given all the things I've read on this site. I can totally related because I prayed that he wouldn't linger for years without being able to talk or recognize me. I was fortunate that he knew me up until his final 10 days and he had his eyes closed the entire time so I never saw the blank stare. I think it's just being honest that sometimes it is so hard to see them in a condition that takes just about everything from them. I can only say that there is a certain relief once they pass. You feel sad and miss them, but there is a kind of peace too. You keep hanging in there. There truly will be some hard, tearful days. You'll get through it, day by day.
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We are sure a lot of us in this boat, eh? Until your parent is in this stage of 'life' its hard to understand " I would rather she was gone". No one would choose to live in this situation. It's such a tough thing to have to let our parents live in facilities and be mostly taken care of by non family but there is really no option when you work and they need so much care - my dad is at home with mum in her moderate dementia and it is obviously very draining on him. She has completely lost knowing what the next step is - dressing, bathing, even sitting and chatting - you have to clue her on what to do next. Thank heaven she is content most of the time but dad has lost his partner and now at 89yo he is working full time again - taking care of her. Yes, I find myself hoping she will go in her sleep; it would be merciful, I don't feel bad at all feeling that way - as I know she would not have wanted to last so long this way.....
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Do not feel guilty wishing it would end. My mother was at the beginning of her journey. I was in the processes of moving her in with me when she had a heart attack and died. Loosing her was bad, but it helped knowing she wouldn't have to face loosing her mind. She was already where she couldn't be on her own and I miss her. But what I miss is what she use to be. Not the shell that she was becoming. She had watched her mother go that rout and it was her worst fear she would end up like that. Instead God took her home so she can be with my brother and dad. So you have my permission to wish it was over. Use this place to vent. It's a good place to do that. Cyber hugs for you.
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I can relate. My husband has ALS. diagnosed 2013 but started in 2011. He’s attitude is sad and mad. He’s changed so much and it’s such a slow process. And I’m his only caretaker. I was a CASA for four years and had to leave in 2013, a volunteer job that I loved, as he could no longer do things. So I have no life. He’s constantly delegating duties n getting rid of my things n his without asking. I’d say something but he has anger issues. ( he was an upper level director/manager for 23 yrs.) he now has no life. And I understand his pain. We have been married 28 yrs together for 31. ( I took care of my mom with Alzheimer’s, and that was hard but she died in 1.5 yrs. in 2007, also. I will pray for you. And cry for all of us that live this life. Take care my friend.
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I empathize with you. My mom languished for 14 years and my siblings live out of state. Perhaps it would help to look at things from another perspective. Enjoy every bit of your dad that is still available: sing to him; show him old pictures; play music from his generation; put soothing lotion on his hands; talk to him about anything; record his voice; bring him cake or ice cream or chocolate, whatever he enjoys; revel in his smile and laugh. Make as many positive memories for yourself now so you can hold those close to your heart in the future.
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