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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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