My Dementia Diary 30 – Fragility

We are both fragile. My wife’s dementia makes her insecure and needy, easily upset by an angry word or errant action. My blindness has left me unable to do much of what I used to do, often leaving me frustrated with my limitations.

Our fragilities don’t mix well.

As my wife is no longer able to adapt rationally to most of what happens around her, including my behavior, it’s up to me to be the adult in the room, to control my responses, to avoid hitting her hot buttons.

Painful experience has taught me what those buttons are. I’ve learned to respond immediately to her requests for attention, no matter how engrossed I might be in some project. It takes very little to cause a mental and emotional meltdown which results in a lengthy period of comforting to restore harmony.

I still screw up, but I’ve learned how to avoid this anguish.

I’ve learned to be cheerful even when I’m not feeling it. I’ve learned to stuff anger and negative feelings that would set her off. And, I’ve learned such discipline is a good thing.

Stopping to make lunch instead of vanishing into an hours long obsessive compulsive writing frenzy is a good thing. Taking a break in the middle of the afternoon to walk with her and get an ice cream cone is a good thing. Pausing to enjoy my wife’s excited descriptions of hummingbirds flitting by the feeder is a good thing.

Being mindful of our fragility and letting my wife teach me how to live fully is a good thing.

tio stib

You might also enjoy: My Dementia Diary 29 – My Kato, My Dementia Diary

17 thoughts on “My Dementia Diary 30 – Fragility”

Your articles are most helpful to others dealing with these circumstances. Gratitude for your candor! 🌺

tiostib says:

September 20, 2018 at 5:14 pm

Thank you for your kind thoughts.

Reply
- House of Heart says:
  
  September 21, 2018 at 2:49 am
  
  Thank you!

I have the same problem in that my husband can read my emotions and it is upsetting to him for me to have an “off” day. He will start saying he is ready to go home, will pack his bags, and if I’m not careful he will walk out the door. It isn’t easy holding it together all the time. I’m glad I have adult day care for a few hours three times a week. Invaluable rest for the stressed caregiver. I plan to blog about that problem sometime. It sure helps to talk about it, though, don’t you think? Thanks for writing.

tiostib says:

September 20, 2018 at 5:09 pm

Yes, my wife also threatens to leave when upset but I’ve learned that this will pass, especially when I change the situation and take her for a walk. Fortunately, there are many diversions within easy walking distance and once we leave our home, her mood quickly changes. It’s a daily balancing act, as I’m sure you realize.

I do appreciate hearing about your experiences. We have friends and family who care about us but I sense they really don’t understand what my wife and I are going through as they spend very little time with us.

Take care!

Reply
- Artist Caregiver says:
  
  September 20, 2018 at 5:15 pm
  
  We have the same problem, it’s as though people are afraid of getting dementia I wonder. It is isolating. I don’t know what I’d do if I didn’t still have one teen left at home. We get to giggle together and I have someone else to set my sights on, so to speak.
- tiostib says:
  
  September 20, 2018 at 5:36 pm
  
  People are afraid of getting dementia and so avoid contact with it. This is true of many human fears. Fortunately, our kids, though they live on three different continents, regularly connect with us through video conferencing which allows my wife to both see and talk with them.

We all become more fragile… I think of the Velveteen Rabbit. Use and experience has taken much but has given much. We are becoming human.

This was such a good post. I can relate for I am also a blind caregiver for my husband and we are both fragile, but in different ways which you articulated perfectly. Losing our sight is isolating beyond what anyone can imagine who has not experienced this. The same fears separate us from our former friends and family members. It’s very much like what happens when person has dementia. Suddenly, people are afraid to be with us, in the same way.
We have many losses and in similar ways. I’ve not been able to write about my husbands losses – yet. And, I seldom address my own challenges in my creative work. I appreciate the way you can put our very unique circumstances into words, even though there really are no adequate words.