Words I never thought I would say

Jazzma

We've all said things to our partner with dementia that we wish we could take back — angry, frustrated, sad, words that they can't begin to understand the reason for. Fortunately they forget quickly. Lately I've said something to friends and family that I never expected to.

I'm ready for my husband to die.

DH has been home from memory care for a month and a half. I love having him close, waking up at night and knowing he's there. I love that he greets me with a smile when he wakes up. But I see him slipping steadily, forgetting how (not just where) to pee, forgetting how to use utensils, not recognizing our home, being concerned about nonexistent people around us. I know that it will not get any better than this. It's been a really hard thing to acknowledge.

There's no telling how long this will last, so being ready maybe doesn't mean anything — but it's a huge step for me. I know many of you understand.

Jazzma

Of course what I didn't say — the hardest part — is that I am ready to have my life back. It sounds so selfish but it is true.

CindiEC

I feel guilty all the time for thinking of myself instead of my DH.
Give yourself grace.
You are doing the best you can in a very difficult situation

Crkddy

Yes, I certainly understand, and you are not alone. Do not be hard on yourself.

Marla13

@Jazzma, it’s not selfish to feel that you want your life back. It’s a part of self-preservation. I feel the same way.

Kat63

@jazzma, I could have wrote your post. My DH is doing exactly what you stated except I don’t get the smile. I don’t really remember the last time I saw a smile. And yes of course I think about what it would be like to have a normal life again, but God only knows when and if that will happen.

debriesea

My DH is not as far along as yours, but is still a shell of the man he was. I also pray for an earlier ending rather than the long, ugly road that could be ahead.
My heart and prayers are with you all on this unwanted journey.

Whyzit2

I am with you on this! I prayed many times to the Lord that he would take DH (stage 5/6) soon, sparing him from going through the end stage of Alzheimer’s. Last Friday DH fell and the EMT came to lift him up. Of course they checked him first and ended up doing an EKG on him and found that he had Low heart rate. At the hospital he was found to have AV high heart block meaning the upper and lower parts of the heart are not in synchronization. They want to put him on a pacemaker. Every day the doctors have been pressuring us to have the pacemaker done even though we said no. Today I received a call from a doctor to see if we had changed our mind. I said to her before we get into that I have a question. How can you justify prolonging the suffering of an 83-year-old man who has Alzheimer’s, Parkinson’s, diabetes, asthma, COPD, and is incontinent? She said to me I see you are looking at the big picture. What else is there but the big picture, these people are crazy.

I feel blessed that prayers were answered and my dear husband will probably pass soon without going through the end stage of Alzheimer’s. 15 years of this is more than enough…..the sooner the better for both of us.

(((((Hugs))))) to you! You are not alone in your thinking. Thank you for being so honest!❤️🙏

trottingalong

My DH is not as far along, just confused at times and short term memory loss. He also has COPD and has these frightening breathing attacks because of very thick mucus that his weakened lungs attempt to cough up. He often ends up on the floor, losing all bodily functions and desperately trying to breathe. I recently told a friend that I hope the COPD gets him before the Alz. I felt so guilty afterwards. We still laugh often though, so then I think why would I wish an earlier death?

annie51

I think we all have those thoughts at some point, selfish or not. I believe any normal person would, but it doesn’t mean we don’t feel guilt for thinking them. I wish I could really know what my DH is feeling - when he’s in a good mood, when he’s barking and cussing at me, when he’s loving and telling me he loves me, when he’s frustrated because I can’t understand what he’s saying. Are those feelings as fleeting as his memory is? Is he aware of what’s happening to him? If I knew these things, maybe I would think differently about whether an earlier end would be a blessing in his mind.

Quilting brings calm

None of you are doing anything wrong by thinking that way. First, they are miserable, you are miserable. Second, they are in pain or are struggling to breathe. Third, we are all only human and we struggle to get through the day ourselves. We are exhausted and a good portion of caregivers sacrifice their financial stability, their health and even their lives taking care of their loved ones.

Timmyd

I am 58 yo, in excellent health and financially stable. My wife 60 yo,is late stage 5 / early 6. Some of the time I find myself wishing the decline in my DW would slow, other time I find myself wishing it would speed up. This forum is the only place I am comfortable admitting this.

cdgbdr

We're all human. No judgment. I think we all feel this

midge333

@Whyzit2 : Great job! You had a clear plan and calmly stuck to it! You are a great example for all of us.

Remember that intervention is the default mode of our medical system. You must have a clear plan to limit care or you will be bulldozed into inappropriate interventions.

We all should have a clear plan before we are in the midst of a crisis. My opinion (and shared by my DW before her decline) is that I do not want any life prolonging treatments for my wife now that she has severe dementia (stage 6). No antibiotics. No mechanical ventilation. No feeding tube. No IV hydration. No pacemaker. No surgery. No CPR. Your philosophy and "line in the sand" may be different than mine. We all look at this differently and that is ok. But, please think through your plan before there is a crisis. It is ideal to talk to your spouse with dementia before they decline to understand what they want done when they reach end stage dementia. Putting your head in the sand until you are in the midst of a crisis pretty much guarantees undesirable outcomes.

SDianeL

my husband passed in August after a steep rapid decline. He passed from aspiration pneumonia. I miss him so much it hurts but am glad he’s no longer suffering. The facility kept asking me if I wanted to transport him to the hospital. I kept saying no. So I understand exactly how you feel. Hugs. 💜

nopost

Acceptance is the final step in a lot of human behavior journeys, isn't it?

Who likes what we face with this disease but getting clear eyed and calmer about it seems a hard fought win to me. Your own health will probably benefit from arriving at this stage also.

Palmetto Peg

I feel the same way all of you have expressed. It is so hard to be the one to watch the slow decline, the loss of ability to eat independently, the incontinence, and to know it is only going to get worse. If my DH could really understand what has happened to him, he would beg me to help him die. We were able to have the conversation about no medical intervention, and it is in both our living wills. I have been approached by the doctor about a pacemaker for my DH and the answer is and will always be a firm NO! No hospitals, no surgeries, no CPR. Doctors all push for whatever their specialty is, and I will resist to the end. I, too, want my life back. I'm tired and lonely and can't see the light at the end of this long, long tunnel. Thank you all for sharing your feelings, and validating mine!

Arrowhead

Never feel guilty and never feel selfish. My wife is in stage 7. She's no longer living, just existing, and I'm also ready for her to pass on, for both of us.

upstateAnn

I adore my husband, but I desperately want him to die soon before he loses more of his selfness.