Are people able to keep their careers while caregiving?
My Mom was diagnosed with Lewy Body about 18 months ago and has remained living on her own in our hometown while my sister and I live in a city about 4 hours away. She recently fell and fractured her arm, so I have been here taking care of her for a couple weeks now. I have worked my way up at my company over 25 years and have a good amount of time off banked, but with frequent re-organizations over the last few years, I worry about being laid off due to being deemed unreliable if I take a leave right now.
I've been on PTO for a couple weeks, but I know I can't go back to work while things are like this. We are working to get mom into an AL facility next month, but she will absolutely resist when the chips are down. I feel so alone here while my younger sister doesn't step up to share the burden- financially or with her time.
I am 47 and terrified of losing my job at the pinnacle of my career for several reasons:
*I need to work to save for my future so I dont end up in this situation with no money and no kids to absorb the cost.
*I can't imagine having to start over somewhere new if I were to be let go- this is where I've been my whole adult life.
*I have worked so hard to get to where I am at and to build up my savings. I resent that my late step-dad and mom lived way beyond their means for many years and depleted everything, leaving me to pick it all up now.
How are folks keeping their careers while helping to care for a parent?
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Your concerns and reasons are totally valid. Your decision to move her to an AL is also the best one. The current distance alone is difficult to handle even if you weren’t working.
First, file for intermittent family medical leave with your personnel department. Intermittent means you are taking a day or a week here or there, not all at once. This will give you the equivalent of 12 weeks a year leave to use for your mom’s needs as they arise. Her doctor will have to fill out part of it. If you have the vacation and sick time available, you can use them for your leave so that your leave will be paid. Otherwise the leave time will be unpaid. The real benefit is that your employer can’t use it against you. So that random Wednesday that your mom needs to go to the doctor or the AL needs you to come for sone reason - you’re covered.
Some of us that were eligible for retirement took it due to the stress etc. You don’t really have that option due to your age and all the reasons you made note of -and the fact that this can go on for a decade or longer.
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Barely. It's been extremely difficult in my situation. My mother lives with me. Once she became more advanced, it became harder to find qualified/reliable help to cover work hours. The stress of trying to provide her with good care and meet my work commitments became too much. I was able to stay with my company on a part-time basis, but it's a sacrifice for sure (goes along with the many others). Sadly, my stress hasn't lessened as every time I try to get ahead of things, something shifts and I'm trying to catch up again. I wish you the best of luck.
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Thanks so much- I do need to look into intermittent leave for sure.
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Sounds like you are living what I am afraid to already- thanks for sharing, and I wish you relief from your stresses sometimes.
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Thank you for this information- I'd say mom knows most of the time that she has a diagnosis, but doesnt acknowledge what that diagnosis means, if that makes sense... Luckily, we do have some equity reamining in her house, even with a second mortgage, so we can use that at first to pay for her care- I am just worried about that "if it goes on 10 years or more". I appreciate you sharing this- thank you.
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Natalie- you can’t control what happens or determine what she might need’ in 10 years or more’ - but you can do what’s best for her and you now.
That’s the decision I chose when I put my parents in assisted living 4 years ago. They’ve got about 3 years of savings left m. Then we will have to get them Medicaid and move them to whatever level of care takes Medicaid. If they live that long.
For now, they are in the right place.
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With great difficulty. You are absolutely right to be thinking about your future, and doing the best thing for your mom. I have felt perilously close to losing my job - not only for the time needed off to move for her move closer to me, but for various crises and endless medical stuff. What people don’t understand is that it’s not only the visits or trips to the hospital that affect work, but the nearly 24/7 undercurrent of worry about health and finances.
Financially, we have been able to cover things so far but we’re close to the tipping point. Thankfully there are options where she is if it came to that.
Still, I may sound very self serving but after a year of setting my mom up and being her caretaker, I’m perilously close to permanent resentment. Whether she is in MC or AL she hates it, calls me 20 times a day, and acts like I’m selfish when I need any space at all.
So I am HAVING to set boundaries. It’s hard but so essential.
Like you, I’m relatively early in this journey and don’t know how long it will be. Take it from me (who also has no other family help), she will need more and more from you and others, and you need to be in tact - financially, emotionally, physically - to take care of her and your needs. I hope this helps.
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It is nice to have found this place to be able to connect with folks in the same or similar positions. Like you mentioned, I am also struggling with resentment, and my mom absolutely knows I am the one to go to that will sacrifice my well-being or "space" if she keeps pushing hard enough. Writing that makes me feel like a monster- how could I accuse my sick mother of manipulating me like that? But I am with you- I MUST set some boundaries to keep myself sane, as I know this battle will get steeper uphill and fast.
One thing I realize as I sit here with her depressed and vacant tonight (after a relatively great day with her yesterday), is that even when she cries for me to "save her" with x,y,z, it doesn't really give her the solution she wants. So I can't stay feeling guilty all the time for not being able to keep a piano afloat in the ocean, if that makes sense.
Thanks for your response, and I hope you are able to stay intact as well.
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@Natalie76 There’s a recent thread on difficult family members who have dementia (or who are the caregivers etc for your LOWD). Sorry, I don’t know how to link it, but search for “poor relationship” and you’ll find it. Others’ experiences may be helpful to you as you consider what to do.
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Noted and thanks for that. I know it's beyond her, and I feel like a jerk for not being able to shake it off sometimes. A financial planner is a good idea.
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Will do and thank you!
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Bakerbaker713, I don't think there's anything about this journey that's easy. Here's my experience:
We moved my mother across the country about 18 months ago. The original plan was to find her an apartment nearby but it became clear right away that she really shouldn't live on her own. She ended up staying with me for 15 months. At first, it was hard but okay. I could take her places, drop her off, and pick her up (e.g., shopping). I could work from home quite a bit, so we made it work.
By around 6 months into her stay, it was becoming clear that she could no longer be left alone safely, so I asked for accommodations to allow me to work remotely four days per week (my son worked remotely the other day) while I tried to figure out what to do. (My backup plan was to file for FMLA, but fortunately, my supervisors were willing to work with me.) I really considered retiring but it would have been disastrous for me long term. In the end, I decided my mother needed to move to AL.
I was prepared for a huge showdown but amazingly, she loved it. I think, after living with me, it gave her back a sense of independence. The best advice I received from friends when considering facilities was to find one that was convenient for me because even in a facility, there would be plenty of caregiving responsibilities, and there have been, between doctors' visits, things she needs or wants, pharmacy pickups, etc.
With my mother in AL nearby, I am able to continue to work, although there are times I am exhausted. But I'm doing it and plan to retire on my own timetable, which will help my children down the line, if I am unable to live on my own as I age.
It has been a HUGE relief to know that she is cared for even on days when I can't/don't visit. It's also a huge relief to be able to pull my weight at work.
It's not the same as before I began caregiving, but it's been doable thus far. Fingers crossed that it will continue.
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@MP8 thanks so much for this insight. We have been angling towards getting mom into an assisted living facility here in her hometown, despite us living about 4-5 hours' drive away, and she is open to it just because she knows she will still be here near her friends (2 miles from her current house)...
However, as a part of this move she is giving up driving too, so I wonder how often her friends will keep her "in the loop" with rides to their social activities. So that's the argument to move her to a facility in the city my sister and I live in... eventually.
Hoping that your situation continues on a good path!
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Bakerbaker, I think you're right to wonder. Most friends drop by the wayside as the disease progresses. The PWD will struggle to keep up in social situations, eventually avoiding them. It's not just the memory, but the ability to interpret a conversation that's occurring at a regular tempo--it's too fast. And they have no recollection of current events or topics, which makes it hard to participate. The same applies to phone conversations. Good thread here: https://alzconnected.org/discussion/66884/how-do-you-keep-in-touch-with-friends-and-family#latest
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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