Praying for this to end
My DH is stage 7, still ambulatory, good appetite, vitals all okay...counting my blessings....is it wrong to wish he will pass before "it gets worse" I am so done with these stages, wondering what I will wake up to each day, crossing off each day on the calendar only to look at a new month with no end in sight...I'm so tired of being tired...
Comments
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Dear Wag91,
No it's not wrong. We were fortunate to have an accelerated stage 7, it was very stressful, but I feel fortunate that it passed so quickly. I wish the same for both of you.
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Wag91, I could have written this today and we're not in stage 7 yet. It's not wrong. It's asking for mercy. I completely understand how you feel. Know you are not alone.
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Dear Wag91, I pray for an end every day, and my DH is only in late stage 5. Every day he looks so sad and doesn't want to do anything but watch TV. I am getting more depressed and losing hope every day that my life is just going to be as a caretaker till I die. I am so tired of this for him and I. As M1 said, it is asking for mercy.
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It's not wrong, it's heartbreaking to think that way but it's also so very heartbreaking to think of them riding out this entire journey to the end.
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May I ask, did he ever become bedridden? Hospice tells me this is inevitable. Last month I was dealing with pressure sores on his feet because he was unable to reposition at night, and now this month he is moving fine, getting up on his own...everytime I think this is the end, he comes bouncing back. My hospice team tells me it will get worse as we go through the final stage (I thought stage 6 was hell) 🤪
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Your post is spot on how I feel (and direct hit of what my DH does each day, nothing)....I try to look for happiness, but feel some of the best years of my life are sitting in my house watching my DH slowly die with no end in sight...
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I don't know if being bedridden is inevitable, if something else takes them first. Aspiration pneumonia or a chronic illness seem to be the main reasons PWD LOs may not go through every single substage and loss of Stage 7.
Here is the Tam Cummings breakdown of the 7 stage model.
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Is this used for Alzheimers progression? My husband has PPA FTD and doesn't seem to follow a lot of what is on the charts...I have always been confused between all the different types.
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I feel the same way. I hate this disease.
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I feel this disease is taking our whole family down at the same time...I wonder what lesson(s) I'm/we are supposed to learn, and "he" never gives us more than we can handle..
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You love your husband and you don't want him to suffer. I honestly hope something else takes my wife before she suffers through stages 6 & 7.
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It's comforting to know others have these thoughts too...makes me feel less of a horrible partner 😢 💔
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It’s not wrong. My daughter and I talk about how it would be more merciful on all if something other than this dreaded disease is his demise. I think it shows your love for him that you don’t want him to suffer more.
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My daughter's and I were talking about this earlier too....they miss their dad...breaks my heart that they have to go through this...we pray that he passes peacefully during sleep.
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My DW has the Semantic Variant of PPA FTD. She is in Stage 7, sleeps at least 20+ hours and is only semi awake the remaining few hours. She keeps her eyes closed all but a few minutes now and then. She is bed and wheelchair bound and on hospice. She is basically non-communicative, with only very brief incoherent speech. But she is only 72 and has no other co-morbidities, so she is on her way to dying by dementia.
My DW would hate being like this, she commented as such not long after I met her 50+ years ago, she was afraid of living in a severely debilitated state late in life. She had no idea then just how bad it was actually going to get for her.
I often think that she would not want to live like this another day if she had her way. I want it to be over as well, but I can do nothing but sit and watch her relentless decline and mourn for us both. I believe it is morally justified to want the misery of our loved ones to end when “they” have gone, but their bodies linger on.
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This stage 7 and what you're experiencing with your LO is terrifying to me...how do you stay so strong?
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I’m experiencing stage 7 also, mostly since early September when she developed a clot in her leg. Anticoagulants seem to have taken care of that (swelling is gone), but she hasn’t walked since then and doesn’t talk or even respond with nods or shaking of her head. Just stares. She seems to pump up when our son or I am there, or at least that’s what the staff at MC say. She still drinks lots of fluids but with the exception of desserts doesn’t eat much. In the past we’d talked about when the quality of life had declined enough that it would be time to go. We’re past that point now. Yet I somehow still get frustrated when I feel she might be getting better care, although it’s ok. She’s comfortable, not in pain, not on any meds. Lately I’ve considered moving her back home. But it’s heartbreaking and painful, even, just watching this a few hours on most days. I don’t think I can do it 24/7 anymore. The journey just continues, for how long I just don’t know. Even though I have the freedom to start preparing to move on I still can’t find the motivation.
I think I wish it were over also. But I’m starting to be curious about how I’ll feel when it is over.
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It is not wrong to hope for an early release from this terrible disease. My DH is in late Stage 6/early Stage 7 ALZ, still fairly verbal though wheelchair bound and very weak. He has congestive heart failure, and the hospice nurse recently told me that he probably has 2-3 months left. I pray every day that he just quietly slips away soon and is spared the further physical and mental agonies of these diseases.
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Yes, the various staging models are used to gauge progression, or where your LO is in their disease, as best as possible. It is not an exact science. But the guidance is that once our PWD LOs show one or more symptoms from a certain stage, that is considered to be where they are.
They may never have all the signs and symptoms from a certain stage, but it helps prepare for their worst day, not their best. And that means understanding a PWD is in the stage where they are showing any of the listed traits. My DH still has some skills that might indicate Stage 5, with a side of advanced aphasia (language loss). Yet, he clearly is now in early Stage 7 based on the rest of the signs.
This process of applying the stages loosely but honestly identifying things that indicate progression, even if the gaps don't show up everyday -- this is sobering but also safer than underestimating their capabilities for too long. Others will come along soon and explain better.
@Wag91 I may have misread your question. Linked below is a specific FTD staging tool from Tam Cummings.
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Thank you for all the clarification 🙏
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My family prays for a quick and compassionate exit.
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Wag91,
Yes my husband did become bed ridden. His legs became weak and his balance was off. As a result, he fell several times, and the third time was the turning point. Hospice nurse helped me put him in the hospital bed, and that was it. He was bedridden for 2 weeks, and it was all down hill from there. Swallowing was also an issue, and that meant that he couldn't eat. It was all about comfort care, at that point and he passed within 2 weeks. I'm glad that you have hospice, they were a great help to me, and they are still helping with counseling.
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Thank you for sharing...so many emotions during all stages of this journey, but when I was told this is the last stage, my thoughts have gone into overdrive...not sure how much stronger I can be for everyone that depends on me, I'm truly running out of gas...
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So much pain for the caregiver. So much mental abuse. I never anticipated dementia would be so hard to understand. There is no communication. How can we not pray for a peaceful end.
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Wag91, you are not wrong nor are you alone. I too have been praying God would take my dh before this stage 7 progressive keeps going.
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Same. He is so strong, and I feel so helpless in the face of this monster disease that is dismantling him bit by bit. I know I would miss him terribly but if he could just go peacefully in his sleep after toughing it out for so long -- I can accept that pain more than seeing him suffer. It would be a blessing. I hate to see him just starting to waste away, and it is only going to get worse. Our poor LOs.
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You are reaching right to the heart of many of us. I look at my husband of 38 (very difficult) years) and pray that he is set free from all this. He is Stage. 6.75, but is deteriorating rapidly, probably due to massive meds to keep him calm. I want what is best for him and that is always my first concern, but I have to have the strength to take care of him. Joseph Campbell said that life was a perfect mosaic where every moving part did so in perfection, that if we could grasp that we would be able to approach peace. I am trying to see it this way, but it requires building emotional "muscle". I guess all we can do is try our best to believe that it's going to work out in the end.
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❤
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@RickM "But I’m starting to be curious about how I’ll feel when it is over." I can tell you what it's been like for me. Like everyone else, I wanted it to end before my wife rode this disease to the end. She was stage 6 when she had a gastrointestinal bleed, and passed on. I was, and still am thankful that she didn't have to endure stage 7. Her passing was the best thing for her, but the worst thing for me. It's now 20 months since she passed, and I am finally finding some minor enjoyments in life. But it's not the same as it once was. Finding my new life was much harder than caregiving for me. I could go to bed when I wanted, got up when I wanted, and ate when and what I wanted. I was miserable.
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My DH with same diagnosis as your DW is super healthy, but exists in another world (he's 69). Today he went up to a round candle I had sitting on a table and started petting it. He literally knows nothing, but gets through each day physically great. I am struggling with the stress of it all and it is starting to affect my health. I will need to place him in a couple of months, in order to save one of us in this relationship. This horror story can not end soon enough.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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