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Sometimes I look at my wife while we are watching TV and the sadness is overwhelming....she is still “there”......if you know what I mean....not gone yet....I wonder....not what the future brings but when.....and what it truly feels like in her mind to be fading away...
She comments...frequently....”see..I remember things”....when she remembers a past event..while at the same time....for example...we we were at Lowes and saw a friend we had not seen in 10 years (we were neighbors for over 20 years....and close friends)...she did a good job faking it...but after he left....she asked me if we knew him...it just overtakes me sometimes...and then...there are moments when it is all I can take to deal with her...and if I get angry with her...later I feel so guilty....the whole thing just stinks...how do you cope?

How did I cope?...
I reminded myself that the worst day that I was having might soon be what I would call one of the better days....
I reminded myself that the constant noise he made, that drove others crazy would be a noise that I would miss once he stopped making them.
I reminded myself that even though he had not called me by my name in over 6 years when I would leave, he would turn to give me a kiss, when I returned he would give me a kiss.
He may not have known who I was but mine was the hand he held.
I was the one that he smiled at when I talked to him.
I was the one that could get him to laugh.
(thanks Timyom..fresh tears here!)
Do I miss doing 3 loads of laundry a day?
Do I miss having to get him out of bed with a Hoyer lift?
Do I miss getting him changed 3, 4 6, 8 times a day including bedding because he liked to "re position" himself so that he could manage to soak the bedding but keep a brief dry!
Do I miss keeping track of what he ate, when the last BM was?
You bet I do!
Would I have wanted him to stay with me longer? You bet
But it would not have been fair. He would not have wanted to live the last of his life the way he did.

Love her
Hold her hand
Tell her that she is safe and that you will care for her as long as you can.
And when the time comes tell her that she can go that she will always be with you and you will be alright.

and I have to throw this in because it's what I do...Hospice can help you and her with supplies and equipment please do not hesitate to contact them. My Husband was on Hospice for just over 3 years and I could not have done what I did without their help, support, education.
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Timyom Apr 8, 2019
My wife’s condition has not reached that stage yet....but nonetheless I have had similar thoughts....that soon I will wish for what I have today...If I could take it away from her and give it to myself...I would do it in a second...thanks for sharing ....and adding so much perspective.....
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Hi Timyom,
Our lives are a mirror of each other. I watch my partner of 41 years fade away and often wonder what he is thinking and feeling. He too did not "hear" the neurologist when he diagnosed him with Alzheimer's. It's only been 4 months since that diagnosis, but he still believes that he is perfectly fine. I've had to stop work to care for him. He has lost interest in all activities except walking around the block a few times a day. This was a man who was always busy with home projects. He was up on the roof, in the attic, or out in the garden. Now, he sits and waits for me to entertain him all day. I can't go anywhere without taking him with me. He gets me up at 6:30 every morning and doesn't want to go to bed at night. He wandered around the house in the middle of the night. I don't know how he can stay awake during the day after being up all night....He won't take a show. Won't brush his teeth and the bathroom has become a HazMat Zone. I'd love to attend a support group meeting, but I can not leave him alone. We are together 24/7. I need a break. I feel like I'm loosing myself, and I'm exhausted He's well cared for now, but I see him fade just a little each day...and yes, the whole thing just stinks. Breathe deeply. Take a moment for just yourself whenever you can snatch it. Banish guilt. Set boundaries....and place one foot in front of the other. I promise to do the same.
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Timyom Apr 7, 2019
We have been married 36 years and together 40... and our situation sounds very similar.....Our neurologist appointment was a year ago January....My wife was always busy.....with clubs...About 5 years ago she received her clubs statewide Volunteer award....could crochet...needlepoint....quilt almost blindfolded...and a speedreader....math was a breeze....now...well she wrote a check to the hairdresser for a thousand dollars...he tore it up and write a new one... so confusion is prominent....she still has interest in things...but it is too difficult...can’t drive..so she waits for me to entertain her...take her everywhere ...she doesn’t wander..but the latest symptoms are delusions....I can leave her at home alone...but I dare not leave town without her..
I retired last May because I was checking on her a lot and getting constant phone calls at work..If I called her and she didn’t answer I would rush home...
So it was time....I thought I could help her do more...but that has not worked out....
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By doing the best we can and giving ourselves grace and mercy when we mess up.

Just like we give our loved ones the grace to not be held accountable for all the things the disease causes them to do. You are on this journey with her, God bless you, so remember for yourself that you can't always help what you do. You acknowledge it and forgive yourself and move forward.

I think most of us here really get where you are and what you are going through. So big hugs and welcome.
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What my brother and I found out is that doctors know less about treating dementia than the family as caregiver does.  They overmedicate, they don't listen, they blame, they misdiagnose, and the list goes on.  Sometimes they don't care and will say things such as, "He/she has lived a good life." 

I suspect that the arrogance and defensiveness and the posturing of clinicians has more to do with feelings of impotence and anger at a disease for which we as of yet have no cure.

We learned to fight for what we knew was right every little step of the way.  And 99.99% of the time, as it turns out, we were right.  We were right that mom was having small seizures.  We were right that she had a kidney infection.  We were right about a lot of things that the doctors would not recognize and it seemed to take an act of God to treat.  We also had to fight to humanize our parents when they were vulnerable, as the thrust of healthcare today is to "conserve" resources.  That means writing off the elderly as "wasteful" of our valuable resources. 

Listen, but do your own research.  Listen, but don't necessarily trust.  Get second, third, and fourth opinions.  Argue, but do it respectfully.  Come armed with your lists and histories. 

Help the medical profession help you and your loved one, because trust me when I say they need all the help they can get.
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marysue5252 Apr 10, 2019
Exactly! Wonderful post!
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One day at a time. That's all you can do. One day at a time. Love them while they're still here and remind them of it every chance you get. They'll go knowing they are loved and remembered for who they are, and you'll get solace in that fact after their gone. Reach out to others when you need to vent either here or in a support group. Or both. Take care of yourself because if you don't, you won't be able to care for anyone else. Were here if you need anything.
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NeedHelpWithMom Apr 7, 2019
Good advice.
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Oh I so know this pain you are going through...My Husband was a dual engineer. Very sad to see when he can't operate the microwave...He has 4 adult kids, they all know what his condition is...Only 1 has come to visit him. I bet they all show up for the reading of his will...I am younger than Husband but I can empathize with the frustration feelings. He has them because he can not find the words anymore..Of course I feel my gut clenching from time to time...And when he has a good day I feel like ahhh, we have a good day going but please remember we all lose our cool when being a 24/7 caregiver. Look into having someone come in so that you can take a break. We are going to Elder Law Attorney to protect assets and updating his will before he can't anymore...Take deep breaths...Peace
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mally1 Apr 8, 2019
You have also had him designate you as both medical and durable POA, haven't you? Then when he can no longer make decisions, you, how know what he would want, or what's best for him, can....
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Do you attend caregiver a support group? That is what this site is but human interaction is very helpful. There was even a men's group that my stepdad used to attend. Check the Alzheimer's Association website to see if there is one near you. It always helps just knowing there are others in the same situation.

There are some men here hoping they will show up.
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Timyom Apr 7, 2019
No...not a member of a support group....probably will eventually....but I would have a hard time attending without her not knowing....She doesn’t like being alone anymore because she feels so lonely...My therapy is running...which I do each of five mornings a week...it really helps....otherwise I try to stay close by....And I am busy working on our home and rental next door...work that I need to finish over the next couple of years before it is too late...She desperately needs something to do....to feel good about herself...but my time to help her attend activities is at a premium....
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I don't have any original advice but just wanted to say you are not alone and keep on checking in with this site because there are a lot of people here who are going through or have gone through what you are experiencing.

Be gentle with yourself.
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You are not alone with your feelings. Heartbroken, sad, overwhelmed, exhausted, guilty for getting frustrated with them, grieving for a life we used to have and aren’t ready to let go of yet are what I think we can all relate to. Acceptance helps. Going with it one day at a time helps. I hope you keep up with your running schedule and stay engaged with house projects. Getting outdoors and breathing the fresh morning air helps to calm the nerves and quiet the mind for a few minutes. Engaging with this forum is good. I checked the local senior center, hospital, and the Alzheimer’s.org website for in person meetings and found one that meets twice a month. I have attended a couple times and found it helpful to get practical advice as well as simple understanding. Friends just don’t get it. Post here as often as you like.
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Timyom Apr 7, 2019
Only close family members know the diagnosis.....but it is getting more difficult to hide it....
Friends treat her like she has the plague.....and hardly call anymore...Our daughter still does not accept it...she lives about 1500 miles away..is here at Christmas so she is not around enough to see the symptoms...
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I'm dealing with mom's end stage Alzheimer's now and she's near the end of life. How do you cope? You really can't. It's more along the lines you HAVE to. I've never been separated from my mom ALL of my life -- she has ALWAYS been the center of my existence so I don't know how I'll cope when she dies..other than knowing it's going to happen to all of us. Taking care of her is very back breaking and the things I have to do--take her to the toilet, bowels..bladder..are difficult for her. She tends to aspirate even with the best precautions and chokes on secretions (I ordered a suction kit and it wasn't cheap). I'm near 60 and she is just a few months away from 90. Hey nobody lasts forever. But tell your memories that.

I think there is no way to prepare for death. It happens and you live through it. Your bills keep on coming in. The cats need to be fed. Litter boxes changed. Life, you know, goes on. and you still have responsibilities. Caregivers who dropped out of the workforce for YEARS have a much more difficult time because it will be extremely horrible to find a job and mom is no longer there to lean on. Caregiver and parent become a symbiotic process where the caregiver depends on the parent as much as the parent depends on the caregiver. It's just that caregiving will become a 24-hour a day, 7 days a week job and it costs hideous amounts of money to hire people. A sitter--who does nothing but sit--is $20 an hour. A certified nurse's assistant who helps with bathing, toileting..that's like $35 an hour. and if you do not go throught a LICENSED and INSURED agency the hired help can CLAIM to fall and hurt themself and sue the estate -- whereas an agency they are insured and must access Workman's Compensation. There are other things like nanny taxes if you hire someone on the street. an agency at least takes care of all of that.

All that will change. so dealing with death AND having to get back with the business of living will be a daunting challenge. I am thankful my best friend watches my mom once a week so I can work and an understanding employer who lets me do this. but those who do not have a job..they will really have a rough go of it. because they can no longer live on their parent's retirement.

Bottom line the bills keep on coming in so off to work and back to the pulse of life. Because you have no other choice.

Death is death..and at least they won't be suffering anymore. And maybe..just maybe the caregiver will rediscover his own self and not live in the shadow of that caregiver role spending one's entire life getting them up, making sure they don't fall, toileting, bathing, feeding, brushing teeth, bowels, bladder routine.

You can't live like that forever. The stress of caregiving will actually kill a person..the constant worries and fears are gripping beyond description. When mom dies..all I know the electric, water, fuel bills will need to be paid..insurances will need payment..so we go on dead inside but wearing our masks of "normal" to the public because we clocked in..and just go on living.

What else can I say about death? I believe we never get over it..but we learn to adapt to this stark reality. At least their suffering is over. Perhaps we will get nuked in a year or so with World War 3 so at least they are spared of that.
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