From Spouse to Nurse

CindyBum

I've seen many here who are further down the road than me and my DW, who mention how moving mentally from spouse to nurse or captain helped the caregiver find a different set of patience and ability to manage. I feel like I could use that more in my approach, but how in the world did that finally click with you all? Early on or in later stages? Did you consciously choose this switch or did it just happen over time?

I know I've gotten better at holding firm on decision making and have gained a great deal of relief in including my DW as much as I can, but not letting her decide because she really can't anymore.

But, the objective, emotional detachment like a nurse…I haven't gotten there. I struggle emotionally with the lack of empathy and the shadowing and the loss of a real connection. Perhaps I still want my DW to still be my DW and haven't let go of my denial that she's never coming back?

Any insight those who have managed this internal change would be so welcome.

xoxo

Russinator

I'm in the same boat. with you. I just breathe deeply, relax and be patient. ((HUGS))

White Crane

Cindy, I don't know if anyone can tell you exactly how to make this switch. For me, I went from wife to nurse to parent and advocate many times a day when he was at home. Now that he is in MC, I cycle from wife to advocate to nurse depending on the situation and the day. Detaching is hard and doesn't always come easily, especially when we love someone so much. I do find that if I take a deep breath and then proceed to do the next right thing that detachent comes as needed. You are doing an amazing job being your wife's caregiver.

wose

Yep, same here. It’s definitely about holding on for me. I get so caught up in the normal parts that I actually forget sometimes he’s not normal. I think my brain is playing tricks on me… and then boom back to reality. It’s so hard cause we want to hold on with all our might emotionally. To step into that other dimension feels like I’m giving up, even tho my brain knows that’s not true. So I isolate which makes me feel so guilty. Maybe we need more time 💕💙Sorry I don’t have an answer.

Biggles

Ditto to all the above. For me there is the practical approach and the intimate approach combined, eg when helping him to shave I lather his face and sing “I saw mummy kissing Santa Clause” and pop a little kiss on his lips, it’s so lovely to see his smile; being one step ahead such as running around to open the car door for him, reaching in and consciously enjoying the intimate touch and holding my DH’s hand to help him safely out of the car and say “step up mind the curb”, love and care and laughter together. I don’t want that to ever change even if he ends up bed ridden or worse I will still try to find something to sing to him about and act on. (Bad tune, short one line and forgotten words but packed with love) So interested to hear how others progress through this awful part of our lives.

Kat63

I’m sure it is different for each person but I came to this full realization about 6 -9 months ago. My husband was well into stage 6 and just been accepted on Hospice. It’s a different mind set when you really accept the fact that you are just the caregiver and that your “marriage” no longer exists. I know the people at my in-person caregiver group said they could tell I had a different outlook and overall has helped me handle our day to day even better than before as the emotion part isn’t there. But also now I find myself thinking about scheduling time for me to have breaks from caregiving. I really didn’t feel quite that way before as I still thought of us as a couple and was fine with being the person with him pretty much 24/7. So it is a different dynamic. At least this is how it has been for me.

BPS

I thought I had made the switch to caregiver and then advocate many times but then I would want to have a meaningful conversation, so I had to make the switch again. This time I think it is finally permanent. It does sometimes feel like your giving up and then comes the guilt, but it isn't giving up it is accepting reality, and it dang nab hard.

midge333

https://alzconnected.org/discussion/comment/237255#Comment_237255

@wose, you sum it up so well!

Jo124c

I'm still trying to figure out what I am exactly…As many have said sometimes my DH seems his old self, and then he starts in with confabulation and complaining about where we live, wants to go back to work, feels another state might let him drive again… I think we are in stage 5 and it moves around to be mid-, early- and late stage 5. I'm trying to figure out how to get some time for myself and how to not be so resentful of his needs. I took him to a day program to see if he would "help" them perhaps one day a week and he was so upset and confused because he kept thinking it was residential and I would leave him there. He of course kept forgetting it was a day program, and he has hearing loss and will not wear hearing aids any more…it's been two or three years since he decided "I can hear just fine" and refuses them. I still take comfort in being with him during our regular routines although he is less and less able to remember our years long routines.

I appreciate hearing from others in this group; thanks for being there.

Vitruvius

For me it was always reminding myself that my DW was farther along than she appeared, sometimes much farther along. As an example, earlier on (she’s now Stage 7f) I would help her get dressed and groomed so she always looked so utterly normal (and beautiful). She was always a reader and looked perfectly normal sitting reading with a book, but I noticed the bookmark didn’t seem to make much progress. So one day I asked her to read to me. She read a single sentence to me over and over, more than 40 times, sometimes pronouncing irregular words differently in each pass. She was completely unaware that she was rereading the same sentence. She had obviously retained only the mechanics of reading, but it no longer meant anything to her intellectually. (We actually continued doing this for awhile as it seemed to gI’ve her some pleasure to “read” to me.)

It reinforced the idea for me that she needed me as a caregiver and advocate, not so much as a husband. That I needed to look well past any superficial appearance of normalcy and acknowledge that she was a dementia patient that need care.

SDianeL

it’s not easy to do. It takes practice. We’re human and not perfect. Keep trying to do the best you can. For me, I just kept repeating to myself the quote someone on this forum posted “you can’t reason with someone whose reasoner is broken”

SteveHawkins

We, DW and I have been going through this process for a couple of years. I am still motivated to try different things for Her and Me. I am Retired Military and THIS is the hardest thing I have ever done. ( tears in eyes). I go through many emotions every day. There is not such a thing as "normal" anymore. I am part of a support group that is helpful. I grasp the good times, as they are fleeting. I ask, Why Me, and of course, Part of me says Why Not Me. I still Love ❤️ her with all my heart, and I always will....

Peace/Out