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ARCG

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My pals has entered the end stages, I fear. He is on hospice and we do everything we can to make him comfortable. However, he refuses our suggestions that would help with his comfort, adjusting bed, recliner position, etc. I fear he has FTD. I suggest one solution, he refuses and 5 minutes later he is indignant because he wants me to do the exact thing I suggested. He has a couple varieties of comfortable masks, but often refuses to use them when he needs to during the day. he wears them all night with no issues. He has neck support issues and we have three types of necks supports, one of which was made especially for him, but gets angry when we try to suggest them. He refuses to wear a neck support and wants me to stand by his chair and lift his head when it drops.

But if I leave the room to clean his masks, filters, change batteries in shaver, fix a meal, clean up the kitchen, on and on...he complains even though he has an accessible call bell (he is not completely paralyzed and I have it where he can hit it easily). I usually wake up before him and grab some coffee and bring it back to the bedroom after making a pit stop and he told me he wants me to get him up and wait until his morning routine is done before I even go to the bathrooom. It seems he no longer sees me as a human being. We have some help, but if I am in the house he will ask me to do whatever even when they are right there. He waits for them to leave and the minute they are gone then asks me to do things they could have done.

I have lost him already, even though he is still here. Last night he had me get him up at 3 am to make some adjustments and asked me to put him in his recliner and turn on his computer so he could text. He proceeded to text stuff that made little sense to the current situation, mostly blaming me for not understanding his speech, (he can no longer talk and I was the last one to understand him when he could). When I asked him if we could text in the morning, he said no and we were up until 5 before I convinced him to go back to sleep. Besides text, we have other ways to communicate, all of which he refuses to use.

I hate this disease, we have lost him already, I will do everything in my power to help him, but it so heartbreaking to have the person you love go through this and look to you for a cure when there is none. He is now blaming hospice for his Illness as well.

i was able to keep him in relatively stable with a good quality of life for a long time, but the last few days he has declined quickly. the hospice nurse suggested considering oxygen, I will probably take her up on it tomorrow, as I fear the end is near and want him to be comfortable.

He is a very good man, loving, involved father and has lots of integrity. The disease has taken over. Thanks for listening. No one could ever possibly understand this who hasn't been through it.
 

lgelb

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I am so very sorry. It sounds like he may be retaining CO2, which can look like FTD, but either way, the effect is the same. The restlessness does suggest nearing the end.

And you're right, at the end, the disease has its say; we only control how we meet it. I know you will make sure he's comfortable at the end and that's the best gift we have to give.

Best,
Laurie
 

affected

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I'm so sorry to hear this, it is heartbreaking that your last days with him are this way.
I do feel it sounds like CO2 retention, and even though giving O2 won't help that it may make him feel a little better for comfort.
It may also be worth having some palliative meds on hand as if his breathing is declining he could experience some distress. Maybe he even is feeling a little distress and some meds would help.

I would talk to the hospice about his mental agitation and see if that can be helped for both your sakes.
I hope you can find a way to keep this time more peaceful 💜
 

Scotiaspirit

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Our thoughts are with you. May the transition be smoother than it currently is. We are sorry for what you are going through. Smith Family
 

vltsra

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I'm so sorry ARCG. You've had a long stretch as a caregiver and have given your PALS all your best. I hope hospice can provide you with support and some comfort.

V
 

ARCG

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Thank you all. You are right it may be CO2 retention.

Oxygen is here and hospice upped his palliative meds, he is resting in his recliner. Family is on the way. I pray we can keep him comfortable. Such a quick decline. He woke up Friday saying he was feeling better and steadily declined over the weekend.

Even though it has been years, I am not ready.
 

affected

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No we are never ready, just because we know it will come.
They may titrate those meds up at least once a day, if not twice. Don't be alarmed, a peaceful passing is so much better than worrying about meds and watching distress. I hope you are well supported by family and can find a place of peace in all this 💜
 

ARCG

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Thanks, Tillie. I agree. He is not himself, probably due to the CO2 buildup. The oxygen seems to be helping him some, They have changed his sedative to a liquid form as he refused the sublingual tablets because he won’t believe he does not have to swallow them. The new meds should be here tomorrow.
He is an only child, but our children and my siblings are very supportive and love him very much, so that is a blessing.
 

ARCG

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One more thought, it is so hard to be asked to fix something that can’t be fixed. I feel so sad and helpless, even though I know I have researched this and done my best to make him comfortable. Does the irrational guilt ever go away?
 

cbiedron

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I am so sorry, Arcg. I just lost my husband on Friday. He also had FTD and was unable to communicate. The whole ordeal was so exhausting physically and emotionally, with every week bringing new challenges. But our ending was so very peaceful. Now that he is gone I can see the big picture and know that I did my best as his caregiver and I know you will too. You have been so good to him. Wishing you strength and sending hugs to you.
 
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affected

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Coming to a place of acceptance of what is, isn't easy and we don't always 'stay there', we have to keep bringing ourselves back to acceptance.
You have zero power to fix or solve anything here. When you can hold tight to that truth - you have no power or control at all, the guilt becomes useless.
I have always been a problem solver, so this was a big one for me at first too.
I always used this saying, but it became so very true on a deep level for me - "If you have a problem, there is a solution. If there is no solution then you don't have a problem at all, you have a fact."

So when you can stop looking at this as something you could have solved, but as a fact you are dealing with, it becomes easier to make the most of each day you have. Not perfect, but makes it a bit easier.
 

pittsburghgal

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ARCG, I am sorry you are at this very difficult stage, but please believe that you are doing everything you possibly can for him. You are an amazing CALS.

Sharon
 

ARCG

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Thank you for your support. He is sleeping much of the time now. when we need to communicate I have a list of several yes and no questions I ask about his comfort, he responds by blinking and I am able to adjust him in bed, etc. as needed. That’s a relief.

This is such a sad time, I like Tillies view that because it can’t be solved it is a fact I am dealing with, I think that help tone down the problem solver in me and help with the stress of facing no solution.

Hospice and other folks have very positive comments on the care we have provided all these years, that is comforting.

The sadness is something I have lived with for a long time and now I feel disbelief and I think shock as well, we have been a team for so long. I hope someday down the road I can focus on all the happy times we had before this terrible disease entered our lives.

thanks again for your support, so much valuable knowledge on this forum.
 

affected

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A time comes after, when memories begin to return their focus to the person they were, not the disease you battled together. I talk of Chris now with a very fond smile, and rarely talk about the disease.

At this point I spent a lot of time just keeping physical contact with Chris, gently rubbing creams into arms, hands or feet was a favourite for me. And talking quietly to him - often repeating myself, not trying to be super clever, just talking about memories, my love for him, things I felt about him. I believe it was a comfort to him even if he didn't respond to much of it and was likely asleep, but I feel it still seeped into him. But it did help me immerse myself in the last days I had with him, by feeling I was with him.
At this time I also had candles around the place and background music playing softly. It really helped ground me.
 

vltsra

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Thinking of you, Annie.
 
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