A new problem. It’s not him it’s me.

Paris20

My husband was diagnosed with AD in 2015. Last May he had a paralyzing stroke. He’s been in a skilled nursing facility since he was released from the hospital following the stroke. At first I visited him every day and stayed for hours. I realized the physical and emotional toll it was taking on me and cut back to 3-4 days per week for 1-2 hours. For awhile it worked well.

The new problem is that, even though I expected this, he’s fading away in every way. He is totally incontinent, can hardly speak so that I can hear him, and cannot engage in any real conversation. I’m finding it increasingly difficult to view his total destruction. He still knows me and is happy to see me but I have become a clock watcher, counting the minutes until I can leave without feeling that old, destructive guilt that I though I had shed. 

Yesterday was the worst. He had refused to get out of bed at mid morning but finally relented. I called the aides and convinced him to let them get him up and cleaned. When the aide opened his diaper, my DH was covered in feces. The aide said I might want to leave the room. I stayed for 20 minutes until I was overcome by too many senses. I left, so in total I was there for half an hour. I still feel rotten and ashamed about the whole thing. I know I could have just stepped out while they got him ready but I couldn’t face any more of it.

M1

Paris, I am so sorry.  Don't beat yourself up.  There is only so much we can all take.  You have been a devoted caregiver and support to him.  This is crushingly difficult, and what you can bear will probably fluctuate day to day, hour to hour.  

In my down moments, which are many, I try to remember what a remarkable, extraordinary life we had together and how much we loved each other.  She would not want me to suffer on her account, just as I do not want her to suffer.  I was singing to myself yesterday: "We'll meet again, don't know how, don't know when...but we'll meet again, some day."  I offer that as comfort.  

jfkoc

I remember "leaving the room". My husband was at home so it was easier to pop in and out.

We all have a point beyond which we can go no further without regrouping. 

We all suffer bouts of grief along the way that are over whelming.

Judith

Ed1937

Paris, guilt is almost always uncalled for, and it is so destructive. We all know in our hearts that there should be no guilt, yet it is so hard to avoid. I'm sorry it is so hard for you, and I wish I could help.

Mint

Paris think this is probably normal feelings to have.  Sorry the road is so rough.  Guessing if you were able to do something to help make it a little better for him then it would probably be a little easier to watch.  When you can do nothing to make it even a little better that is tough.  Just a thought.

Nowhere

If the table was turned and you were he, what would you like for him to do under the same circumstance? When he was healthy, what would he say to you about this scenario? Would he blame you because  you couldn’t bear to witness his “destruction”?  Perhaps he’d say, please go and take care of yourself because I love you, and I know how hard it is for you seeing me like this because you love me.  None of this is your fault, Paris, 20. The insidious disease is at times simply unbearable. In all likelihood he is unaware of everything in short order, and if not, forgets quickly, with no sense of time. Sending a big hug.

Buggsroo

Paris,

Now I try to wash my husband. No dice, he gets so freaked out, tells me he is afraid. I feel awful, so I let him stink but I often scarper down the basement because I can’t take the smell and the relentless progression. I talk to him, but he doesn’t really answer, just makes sounds with his fingers or bites himself. I know my husband of old, clean shaven, wearing nice clothing and wearing the French eau de cologne I bought him, would be horrified by how he is now. It is heartbreaking. Please don’t feel bad or guilty, there is only so much someone can take. Go easy on yourself, keep the visits short and know when to leave.

MaryG123

It sounds like you need a break Paris20.  Any chance you could take a short trip, or attend a conference or retreat?

Paris20

Thanks to all of you. The information, support, and advice I find here always help me. I’d love to take time off but I had knee replacement surgery a month and a half ago and I’m still involved with PT and rehab. During my recovery, I couldn’t visit my husband for a few weeks so I’ve already «been away.» I also owe my 100 year old mother a visit. She lives out of state and is very ill. I guess part of my problem is that I seem to hit a wall everywhere I turn.

toolbeltexpert

I certainly understand the grief you experience it is so hard on you physically and emotionally. I have been working on less time with dw. I still haven't missed a day yet, but that day is coming. I am trying to setup a 3 day camping trip by myself so I can go fishing, something I haven't done in at least 15 years. Just having that in my mind has been like a little light. Take care of you! You are doing a great job!

saltom

Paris20, one of the things I like about this forum is that we all share so many of the same experiences. I can certainly relate with your feelings. I was emotionally devastated the first time I left my DH in out of home care. I visited nearly every day and found as he declined I became a chronic clock watcher. He is now in a new MC setting, and I am feeling much relieved that I no longer have to go visit and/or talk on the phone every day. Knowing he is safe, even though not the man I married, helps relieve guilt a little bit. I think.