RSS Feed Print
Emotional Calculus
Posted: Sunday, September 19, 2021 8:26 PM
Joined: 8/19/2016
Posts: 445

Meeting my DW's physical needs is easy. Laundry, cooking, bill paying all come naturally to me.

So much of my own energy is spent on trying to include her; trying to keep her mood stable; trying to keep her "happy." It's time for me to start living again, beyond the confines of this disease (we're both 56). 

An in-home caregiver starts next month. I'm looking forward to the "freedom" but fear the negative repricussions (DW's mood, anxiety, etc.) ... I guess what I"m looking for is "permission" or support that will help me enjoy time to myself even though she may be suffering with the change in routine. 

Thanks for your help and support. 

Posted: Sunday, September 19, 2021 9:36 PM
Joined: 6/12/2016
Posts: 1826

Hello John, I feel safe in telling you that everyone here will support you 100% for taking time for yourself. I believe all caregivers deserve time off, especially a spouse. I don’t know what stage your wife is in, but definitely tell her the caregiver is coming to help/assist you! I’m very happy that you will have “You Time”! You’ll feel better emotionally and physically. That’s a big win for you and your wife. 

I’m sorry that you have to be here. Dementia SUCKS. 

Posted: Sunday, September 19, 2021 9:50 PM
Joined: 10/24/2019
Posts: 572


I am glad for you that you are bringing some help in.  You are absolutely doing the right thing.  

A few points. For one, your DW may not ‘suffer’ with the change.  My DW (rightly) adores the two aides who help her…and me.  There may be an adjustment period, so don’t judge too early that this is bad for her.

For another, you can’t be your best caregiver self with total self-abnegation.  That’s a formula for burnout and for resentment.  Just because we’re caregivers doesn’t mean we have no interests, hobbies, things we want or like to do—it means we often don’t have the time, the opportunity, the mental energy.

Looks like you’ve been on this road, officially, for something like six yers.  That’s a long time, even if others have done it longer, and you are still young.  I think it’s right for you to ‘start living again.’

I’m 64 and in year five of caring for my DW, who is now late stage 6.  This journey could end tomorrow (DW has aneurysms in her brain) or go on for another 10 years or more.

I have slowly come to the decision that I have to start to slowly separate part of my life from my DW.  And I am starting to do that.  It’s hard, and it hurts to do it—it’s further recognition of the losses already incurred, and acknowledgement of more to co me.  But it feels like I’m also re-engaging with the world, and not entirely a prisoner of AD caregiving.  I can’t stop or alter the course of my DW’s disease.  So I’m going to try not to go down with the ship.

There’s plenty of room in the life rafts.  So climb in!

Posted: Sunday, September 19, 2021 10:16 PM
Joined: 1/1/2021
Posts: 121

I 100% agree that home help is both needed and well-deserved. One person cannot carry the entire burden (loving though that burden is) forever. I will be interested to hear how the home care works out for you. We are earlier in the journey than you are, but still young and I am very highly motivated to be able to continue working which will require help sooner rather than later.
David J
Posted: Monday, September 20, 2021 8:36 AM
Joined: 2/15/2020
Posts: 408


We’ve had a helper for two years now. Twice per week for 3 hrs each time. I use that time to see friends or do errands. It took some time for my wife to get used to having someone else in the house, and I stayed home during the first few weeks. I worked in my office, the basement, or in the garden so that they could get to know each other. It has worked pretty well. 

Posted: Monday, September 20, 2021 12:35 PM
Joined: 12/21/2018
Posts: 1216


I support you! I applaud you for taking care of you. I see bringing in help as an investment in your health and wellbeing, which is so very important.

Kudos to you. You may go through a transition period. I did when I brought in help. Give it time.

Blessings to you.

Stuck in the middle
Posted: Monday, September 20, 2021 6:17 PM
Joined: 6/4/2017
Posts: 1420

Go for it.  Your wife will be fine.  In fact, she will probably enjoy interacting with another person after she gets used to it.  Charming and clever as I may think myself, my wife enjoys a change of pace from time to time.  And God knows you need a break.
Posted: Monday, September 20, 2021 8:51 PM
Joined: 4/12/2019
Posts: 363

with you 100%.

And change can often be difficult for all of us.....especially if we're feeling a bit 'unsteady' and rely very much on things staying the same.

One thing I've learned: making the right decision is often very hard to do.

You are making the right decision and nothing is irrevocable.

When we decide to go away (to marry, to college, for a career), it is usually a pretty stressful decision and perhaps not always easy for the parents and other family members.

It is indeed calculus.  You can't go through life keeping everything perfectly happy, or without making mistakes.

Carry on!


Posted: Tuesday, September 21, 2021 1:31 AM
Joined: 6/13/2020
Posts: 374

Good decision !

I started to have in-home cargiver 1 year ago.

Aug. 2020 : 3 hours per week at the begining. It was to go out, they mainly walked.

Oct. 2020 : It went well so I added 1 other afternoon with the same caregiver.

Nov 2020 : 2 afternoons with the caregiver + 1 day of day care (10AM-4PM)

Jan. 2021 : 2 afternoons with the caregiver + 2 days of day care

March 2021 : 2 afternoons with the caregiver + 2 days of day care + 1 in-home caregiver to help the morning (shower and dressing)

June 2021 : 1 afternoon with the caregiver + 3 days of day care + 1 in-home caregiver to help the morning (shower and dressing)

Sept. 2021 : 1 afternoon with the caregiver + 1 other with another caregive + 3 days of day care + 3 mornings in-home caregiver + 2 end of afternoon in-home caregiver. We have 5 different caregivers  coming home !

Now we are at 17hours in-home caregiver per week + 20 hours at the daycare... it is still not a complete working week for me and it becomes an issue as teleworking will soon stop.

Sharing caregiving really helps because you can't always be at the top to stimulate your spouse and they need social interaction. It is sometimes difficult to manage (for me it is someting more to manage), but I think it is a valuable help for me and for him

Posted: Tuesday, September 21, 2021 8:04 AM
Joined: 5/25/2020
Posts: 357

I found the emotional energy harder to replenish than the physical energy, and I love how you titled this post!

Even if your wife does have negative emotions, which she may very well not, please persevere, for you. Even if you have an unhappy wife for the evening, after you get back, those few hours for yourself will be energizing for you.