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Yes. My inlaws both had dementia. Lived at home with their dog. Both died of diff issues (neither dementia) one month and one day apart in their 80s. Eleven years later I think they did ok.
Try reading “Being Mortal, Medicine and What Matters in the End” by Atul Gawande. It will help you reframe the aging and dying experience in our culture. The medical details won’t make you feel better about losing your parents. Do something nice for your sibling who has POA. It’s a lot of work.
And no need to feel guilty. They don’t miss you is my guess.
It’s you who will miss them. As my little 93 yr old aunt (with dementia)says, “when they are gone, they are gone for a long time”.
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Thank YOU for asking this question, and for everyone who answered. This forum of people who really 'get it' is a pit stop of sanity for me.

Alas no answers on my end for this topic, but..blessings to you all!
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kanguiano - dementia patients eventually lose their ability to understand their illness therefore they don't suffer mentally as much as their caregivers do.

We, caregivers, are the ones that have to do everything for them that they used to do for themselves. We are the ones that suffer stress and burn out, they don't. We have it worse than they do. So, please do not feel guilty.

My Alz. mother lived with me for two years, I was so so so stressed out, burn out, my young kids were too, as was my husband. My kids hid in their rooms to escape her insane repetitive questions and comments. My husband and I had no privacy. She woke us up multiple times in the middle of the nights by setting off the alarm. She picked ALL my fruits (in the hundreds) when they hadn't yet ripened so all had to be thrown out. We didn't go on vacation for over 3 years, and still haven't. She was destroying our lives and oblivious to it.

Finally, beginning of this year, I moved her out to her own place. I still spend many hours with her every week but at her place. My kids and husband don't have to be exposed to her except when she stops by for short visits. Peace has been restored at my house.
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kanguiano Oct 12, 2019
Polarbear - Thanks for sharing. I'm glad that peace has been restored at your house. I haven't read a lot on alzheimer's and dementia patients, but I know that behavioral problems are a definite part of both diseases. Sounds like you did the right thing - it seems there is a balance between caring for dementia/alzheimer's patients and setting personal boundaries for your own (and your family's) well-being.

Since my parents live in the health care center in their retirement community - my father in memory care and my mother in assisted living, the staff is responsible for their day to day care. I'm sure not all health care facilities are the same, but at this facility, the nursing staff is SO wonderful to the patients, that I consider them angels of care for my parents, which is a huge relief!
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Thank you to everyone who took the time and effort to respond to my question! I am blown away by the support on this site and the similar feelings and responses all of you have in dealing with this! I am a year and a half into this, when my father was admitted to a Memory Care facility. Since then, the decline has been dramatic and, I'm sorry to say, horrific to see and accept. Oddly, my mother has developed dementia too, but at an earlier stage (assisted living). They have been married for 57 years - has anyone other seen both parents develop dementia within a short time of each other? I am not the POA sibling (have been cut off from medical information about both parents from my POA sibling) and live 4 hours away, so only get up to see them every month or six weeks. I feel guilty about that, and about not seeing them more frequently.

Sometimes, when I am going about my day, all of a sudden it hits me that my parents have dementia, and it is like a trauma flashback or something.

I'm not really very religious (although I was raised a strict Catholic), but find myself wondering how God could allow people to go through dementia - it seems SO cruel. I guess a consolation is that people with dementia may not realize the extent of their illness, and their suffering may be less.

It does feel like grieving a death at times, and I have coped like many of you have said: curling up in a fetal ball of depression, drinking more, feeling guilty. I think all of those reactions lead to a helpless feeling of being mentally paralyzed. Then I feel guilty, because I am not even the one suffering from the illness!
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AlvaDeer Oct 12, 2019
I am a complete atheist, but of course I could be wrong (have been so many times) and the one thing I am certain of is that no God would make people suffer as they do. There are, after all, small children going down with leukemia and brain tumors and like disasters. I have no faith to get tested and to me we are just sort of squirrels. Some of us luckier than others. When you witness what your folks go through just know that it is different than having it. Try to read a bit about that great lover of the brain, Oliver Sacks, whose lifelong essays on the brain are so fascinating.
As to guilt, if you killed someone I would vote for your feeling guilty about that. Otherwise, not. I think we as the family get a bad case of the "fix its" and think it is on us to do something. As in "There must be SOMETHING I can do to fix this." There isn't. Because whether or not there is a god, we sure aren't it. We have human limitations. Welcome to this world of the trying-hard-as-we-can limping along as best we can. Hugs.
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Like grief, there is honestly no answer but time. You adapt to a new norm. You have essentially lost a relationship; everything is changed and new and different and you adapt and adjust. In the beginning it is pretty horrific, and with my brother's diagnosis last February I went into a real solid depression. I thought that given we are BOTH near the end of our lives, at 77 an 85, that this was IT. That is would be all about this and nothing decent would ever happen again. I began to function, to learn, to adjust. And there are still moments of obsession. Of depression. Of anxiety. Of paralyzing fear of where things will go. But there are also moments coming back of real life, the reading and gardening and cooking and walking and dog rescue stuff. Now even a brief short trip coming up. And there are moments when joy leaks back in.
I am wishing you so much luck. Be easy on yourself. Allow yourself to rage and grieve and curl into a fetal ball of depression, once in a while. Then get back up and seek the things you love. Sewing is my perfect zen. I seek it out when things are toughest.
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I think a lot of it depends on the dynamic of the former relationship, but yeah no matter what it's traumatic to face that you will have to deal with the awful decline of dementia.

I'm only a year into it, and I am only just now beginning to accept it. By "accept" I mean I think I am, as I am at least not in a state of crippled depression anymore. It's like you just get used to a new "normal".

Things I used to cope (warning not all of these are healthy so YMMV.... )

Drinking more alcohol (that has slowed down a lot tho)
Taking an anti-depressant for four months to get me out of a dark head space (Lexapro)
Therapy.... lots of it
Getting out and getting exercise to just get out of my head when I was consumed with worry.
Isolating. Granted this isn't really healthy behavior, I just noticed I've made my inner circle much smaller, and I'm okay with that right now. I need to save my energy.
Diversionary activities- I got back into reading and playing chess online.
Keeping my relationship with my husband going by making sure he was not ignored or neglected. This got better as I got less depressed.
Reading at this forum.

Hoping for the best possible outcome and that it doesn't linger forever.

Good luck.
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It is a matter of accepting what is. And then learning, learning, learning. About yourself and about your parent. Mostly you learn you need help and that love wins. It might be a very slow process, so there's time to correct mistakes made at first, such as arguing with them or trying to bring them back to reality - try to not do that. Your expectations change. What you expect of yourself and of your parent. Taking over someone else's life for them feels wrong at first, but eventually it becomes automatic. You find strength you didn't know you had. Ask questions, tell the stories, laugh, dance, and sing to take care of yourself so you can be there for your parent.
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i felt like in the case of the two elders i accompanied in their final months and days , the dementia was a little frustrating for them but seemed to shield them from the stark reality of their waning existence . they seemed to live in the moment and occasional moments of humor was evident in both .
im not convinced that dementia was a cruel condition necessarily .
probably caused the carers more distress than the patients .
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You grow in ways you could never imagine. You become a person that is more compassionate, more patient, more loving, more caring..... you learn to appreciate simple times and learn how to best deal with the hard times.

You grow as a person. Some just cannot be a hands on caregiver. And that is ok too. It takes courage to admit to yourself that you cannot do it. The goal is the best possible care no matter who provides it.

Always remember you are not alone. There are many in very similar situations. Reach out for whatever type of support you need.
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It is very much like any other grief.......usually, once we are done crying over the loss, we slowly heal with time.

sometimes there is guilt with it too. Losing our temper at mom or Dad because we lost the ability to cope for a short while....forgetting that it isn’t their fault.

sometimes there is the feeling of loss that exists long before the parent dies. Knowing that the parent we knew is already gone and we are just tending the body left behind.

time is the great healer.

if you cannot get past the grief, then seek a grief counselor.

we all go through this. There is a peace to be found...with time.
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Kanguiano. I promise that you are not alone. My mother has the beginning stages of dementia and all we do is enjoy as many things possible with her. We look at old photos together and share past times well spent with her. My mother loves talking about her childhood as well as when I was growing up under her care and love. Basically, long term memory stays far longer, but it is short term memory that fades quickly. Anytime you need a shoulder to lean on, we are all here for you.
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kanguiano Oct 12, 2019
Dear Alphabase, Thank you SO much! I can't believe how lucky I feel to have stumbled upon this forum. I amazed at the outpouring of support and empathy on this forum for dealing with, and watching a parent decline through dementia. I have never before felt such human support, caring and empathy from online interactions! Thank you, AGAIN!
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I don't think you "get over it"
You get through it.
You learn to deal with day to day realizations that there is a decline, they will not get better but will get worse. This is not like other diagnoses that there might be a cure for or treatment that would actually prolong life.
You also learn to appreciate the good days
You learn how to deal with the bad days
You learn that the bad day this month WILL be a good day in two months
You make decisions early as to what your plan will be. Stay at home with a caregiver, move in with you or another sibling or find placement in Memory Care.
You will learn patience
You will learn how to deal with frustration, anger.
You will also learn how to enjoy little things that will make you laugh.
At times you will think you are alone but there is help all you have to do is ask.
You need to learn that to ask for help is not failing, it is human.
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kanguiano Oct 12, 2019
All I can say, is, "Thank you so much!!" You made me feel not so alone.
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