Working Still

CindyBum

I get so much help here. I can’t thank you all enough.

Many of you are much longer on this journey than I am, facing more difficulties. My SO is progressing, no question, but her personality is the same, she’s still relatively present and she gave up driving without a fight. She’s safe alone during the day while I work, but lonely when I’m at work.

Like many of you, I’m much younger (15 years), and I have many more years I could work. I can’t really afford to retire yet, but I’m so worried that I’m wasting the last year or two of time with her still pretty present by going to work. I’m torn between the break it gives me to use my brain and interact with people instead of sitting at the house with her, watching NCIS again. But she knows I’m there when I watch TV with her. Soon enough, she won’t.

Am I making a mistake by still working? Will I also know the right time to stop that just as I think I’ll know the right time to place her, if/when it comes to that point?

CheriMrkva

I like you am still working, I am eligible to retire by age, but not so sure we could afford for me to do so. My husband has not recieved a diagnosis yet. We know something is going on with him mentally but the primary doctor and the neurologist don't seem to agree. The primary says he has had TIAs but the neurologist says no, that it isn't neurological but physcological. We finally have an appointment with the physciatrist this Wednesday. The PT he works with is in agreement with the primary, she specializes in stroke patients. It is very fustrating. I think we need to take care of ourselves to be able to help them and working is our outlet. I have a camera that I can watch my husband on, which helps ease my mind some. I still need to get him some type of alarm system if he falls which is why he is currently at rehab but, I was there when he fell and still couldn't stop it. I think you will know when it's the right time to either stop working or place her. Good luck in your journey.

Howaboutnow

Similar age difference here. I continue to work and it’s a necessity as well as saving my sanity. I am tremendously grateful for Monday to come. I have schedule flexibility and can try do some work at home, which helps to limit my time away. DH cannot be alone, so that requires a paid caregiver for a few hours. Honestly, I will spend more on caregiving than i make so i can keep my job and sanity. I need health insurance and I’ll need to find my place in “regular life” again sometime. For me, starting over in a career doesn’t sound awesome as someone who is past their prime more every day🤪.

That’s today’s plan anyway. That’s the plan till it doesn’t work.

I might try to find something for your SO to be involved in for some of the time while you’re away. Could that work? If she enjoys being social and is present, would community classes, maybe at a senior center, be fun? Some of those even offer transportation. Or classes at a gym? It might do you as much good as her knowing her world is staying open. And it would feel good to hear her talk about her day when she’s had an outing.

PS I believe decisions we make managing dementia, decisions that are sound in their consideration of all realities at the time, are not mistakes. We will make different decisions than our “neighbors” but our decisions are unique to us. No judgment.

I’m sorry you both find yourselves in this position.

CindyBum

I like the idea of seeing if she’s up for getting back in the pool. She does love to swim. Maybe it’s time to hire someone to take her a couple of times a week.

Having a job and a slight bit of social contact is saving my sanity right now, for sure.

thanks!

mrahope

I feel you on the age difference. I am "fortunate" that I ended up being old enough to retire as my husband's health has deteriorated. 2018 was a tough year, with my mother's hospitalization and passing, and then my DH needing bypass surgery less than 6 months later. I found myself missing more work than I should to care for both of them, so retirement had to happen. If I could have, I would have kept on working, as I enjoyed it.

Don't retire until it's right for you, or circumstances force it, unless the job is harming your physical or mental well being. And your partner being involved in what interests her is a priceless opportunity you can provide and encourage.

FWIW, I wonder how I will do in stage 8 almost every day. I also am keeping up activities that I enjoy for as long as DH can safely be on his own. These activities have saved my sanity more often than I care to admit.

Jeanne C.

Similar age gap (I'm 53, he'll be 65 in a couple of weeks). I did decide to take some time away from work this summer and don't regret it. He's been progressing quickly and needs more care - he's just moved into stage 6. I'll return to my career soon (finalizing longterm care for him now). We were incredibly blessed that we had the means for me to take this time with him.

M1

Im 67, my partner is 82. In 2011 at age 70, she was diagnosed with an incurable lymphoma. I was an internist in active practice and with two kids in college from a previous marriage. We didn't know how long we might have, so I made the tough decision to quit work so that we could enjoy time together on our farm while she still felt good, and so that I would have the flexibility to help her should she need to be treated. What helped make the decision was that i could afford it (she was much more well off than i), and i knew that I would regret not doing it if i didn't take the opportunity and ended up losing her. So for two and a half years, i lived completely off of my savings, and we did in fact have wonderful time together that i am so, so glad that we had. The lymphoma went into remission (though can still recur), but by 2014 she had early signs of dementia. That fall however, an opportunity arose for me to go back to work part time, so at the beginning of 2015 i went back to work 3 days a week, and i was able to continue that work up until very recently. It was all computer-based and once the pandemic hit was completely from home, which was a blessing in disguise because by that time she needed more supervision. I was extremely fortunate to be able to afford to do this and to have it work out like it did. I am very grateful for those good years that we had together, even though she has no memory of them now.

sandwichone123

My dh and I are the same age, but he has early onset. My nightmare scenario would be quitting my job to care for him and then at Stage 8 finding myself in my 60's with no job and no recent experience. I have no desire to stay home as a full-time caregiver, and I am very lucky to be able to afford to keep working. I realize that not everyone makes as much income as long-term care costs, and folks are forced to become full-time caregivers whether they want to or not.

My dh is in assisted living where he has company and activities while I'm at work, and he's not taking long walks and coming home telling me about all the bad things "they" or "those kids" are doing.