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 Working and caregiving 
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Working and caregiving
I need your help and advise.
Mom lives with me, so I'm pretty much a full-time caregiver. I get a couple of hours of help every weekday from the only sister in town. but by 6:00 it's just Mom and me.
I also work full-time as a Technology Project Manager at a major University. My job requires organization, planning, a significant amount of thought and documentation (i.e. intellectual property), and well over 40 hours/week.
I know there are many others out there like me. But how do you guys do it?
I take anti-depressants to help me focus. Every few months, they seem to become less effective and I'm back with my doctor who tells me that I have a lot of room left for increased doses. But I worry about getting over-dependent on them. I take anti-anxiety medications to keep from crying in the middle of a meeting (for no reason I'm going to disclose in the meeting). My work is suffering and I worry that I'm not giving Mom the care she deserves.
I am 57, but early retirement is not an easy option. Layoffs, not because of the current economy, but because of the overall economic climate for the last couple of decades, have eaten up any 401Ks I've had. I do have a retirement fund from my current position. But if I retire early, I'll lose over $1000/month in retirement benefits. And a reduction in work would mean that my salary over the last 5 years would dimish, also causing a loss in retirement and Social Security. And, at 57 and in a technology field, once I leave the full-time workforce I am unlikely to have much opportunity to return. And I need all of my income so that I can keep the premiums paid on MY long term care insurance. I'm surely going to need it!
To top it off, Mom needs someone with her full-time, but is no where near ready for a nursing home. She has practically no funds of her own, so an assisted living situation is out. Right now, she spends her day at senior daycare.
I know I'm not alone. But how do you do it? Are there financial resources/assistance for people who need to reduce work time to care for a LO? (When I say work time, I don't mean workload. Just time in the office.)
I'm loathe to try respite care because Mom is at a point where she would be frightened by a stranger in the house. Besides, Mom is getting assistance from Alternative Care, which would cover the cost of a respite worker. Now I don't mean to sound biased, but Mom has a lot of difficulty with language skills and most of the people available through this assistance are from Somalia or Sudan. Wonderful people, but their English skills leave a lot to be desired, which is more of a frustration for Mom than a help.
So what do you do? How have you survived it?
By the way, Mom is an incredible woman who, widowed at 50, got all four of her daughters through college, went to college herself at 50, and has always been a source of strength and love for her family. She's always sacrificed for me and I believe it is only right to return the favor. But how to find the balance between my future and Mom's present?

Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]

Sat Jan 23, 2010 8:01 am

Joined: Thu Jul 03, 2008 11:05 am
Posts: 150
Location: Raleigh, NC

Our situations and mothers' life stories are very close, except that two years ago I had to give up keeping Mother at home and place her in the dementia unit of an assisted living facility. Fortunately, so far Mom has enough financial resources to cover the cost.

As much as I would like to have her here with me in many ways, I know I couldn't handle it physically. She is totally dependent on others for everything, and I can't move her on my own. Before -- when she was more physically and mentally able -- it was actually more stressful emotionally because of the delusions, escape attempts, fall risk, vigilance with bathroom needs, etc. I worked out of my home at the time, and she was with me 24-7, except when I called in a sitter so I could meet with clients and such. Work was suffering, and I wasn't sleeping . Even now, life is stressful enough, with little time other than for work (after 23 years of self-employment, I'm back in a "normal" job) and Mother.

All of that is just to say I understand. I don't have any great tips for surviving, but do listen to your doctor (and your body) about the need for medical help to get through this time. I don't think a higher dose of antidepressant will make you any more dependent; you'll just gradually come off when the time is right.

Research any possibility of financial help that would allow you to place your mother in a secure dementia facility. It will be better for her and for you. Talk with folks at your area council on aging or the Alzheimer's Association. Does she have any long-term care insurance? My mother's is allowing us only a half benefit (long story), but that's better than nothing.

And bring your sisters into the care-giving, research and decision-making. You cannot and should not handle this alone.

Oh, one little tip for stress relief: When my mind is consumed by grief or worry, I find the only thing I can concentrate on that will get me totally away from it is a good murder mystery. For a little bit of mystery and a lot of laughs, try Janet Evanovich.


Sat Jan 23, 2010 12:41 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Hi Kate - I'm so sorry for what you're going through. I'm no expert at this, but I'm willing to share my thoughts.
1. If you don't take care of you, who else is going to? You depend on your health, your mother depends on her health. You have to do what you have to do for you. I don't mean to sound mean or selfish, but that is the reality. Take it from one who has just ended up with major health issues because of the stress of all this, and I am not even doing the hands-on caregiving. I recently had to start on anti-depressants (among other things), which I never wanted to do, but they help me level me out so I can cope so much better with the normal everyday stuff and when things get worse. Like Garnet said, your doctor should be on top of this and be giving you good advice. Sometimes we just have to rely on them.....
2. You know your finances, and know you need to keep working, so going back to #1, you need to keep healthy and have the time and energy to go to work. Do you have any medical leave saved up? Can you use some of that to work part time? FMLA, which is a federal law, allows people to take off something like 2 1/2 months for the care of a LO if you are the main caregiver. If you haven't already, see your HR office and ask about that if taking some time off would help the situation.
3. Why are you sure she isn't ready for a nursing home? What does her doctor say about this? Financially, my understanding is that if a person has less than $2,000 (not including their house) Medicaid will pay for a nursing home with a doctor's statement that that is what is needed. Of course there are nursing homes, and then there are nursing homes. The ones that are also rehab centers seem less depressing to me, because there are a lot of people there who are recovering from injuries and such and are a lot more generally together physically and mentally, and there seems to be a different kind of philosophy and care for the patients. I don't know if there are asst'd living places that will take Medicare patients - I know that the one where my dad is won't.
4. There will come a time, and given what I've experienced as well as what I've read on this forum, a precipitous drop in our LO's health that can strike at any moment. At that point it will be very clear you probably can't do the care. My dad became immobilized and unable to do just about anything very suddenly. I could not lift him, transfer him, and can no longer even get him into the car to take him to appts. because of this. So, when he has to go to the doctor he gets a ride in his wheelchair in the handicappede bus and we drive there separately.
5. Try to get siblings to help, but don't count on it. Most of my friends who have 1 or more siblings have found that the care ends up being done by one person or mainly one with a little help from another one. (unfortunately this even in families where there are up to 7 siblings!) Made me feel better than I only have one sibling.... I'd just be even more frustrated not getting help when I need it!
6. Stay in touch with people here if you find it helpful. I only joined a week ago and feel so much better because of it. If you can join a local support group or get one on one counseling (I do both of those too!) it might help - it helps me a lot.
All the best to you in this very difficult time. And if you want to chat, I'm often logged into the chat line on the LBDA site. Lynn

Sat Jan 23, 2010 2:12 pm

Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Garnet and Lynn, I can't tell you how much your responses mean to me.

Mom does have a great county case worker. He's got a lot of advise that I am trying to follow through on. One of his suggestions is to get what I can of Mom's money into a pre-paid funeral plan. That would bring her total savings down and decrease the portion we pay for services (basically just daycare right now). I have tried to research this, but I can't bring myself to actually do it. It's that doing this would be admitting the inevitable. I can be very rational and reasonable about a lot of things, but with this I turn into a little girl who wants her Mommy. It's a awfully hard thing to do. So I'm going to take your advise and ask my sisters to do research, too, and we'll make a decision together, I'll write the check and it'll be done - if my sisters can do it.

The financial issue is that I can't take the time off to take care of Mom, which is the thing I want to do more than anything. The county will cover most of the expense of having a respite worker, a total stranger, take care of Mom, but that's based on what Mom has - not any reduction in my work or income. And Mom has always had a proud "not in my house" attitude that's so ingrained I think a stranger unfamiliar with her routine might spark some of the behaviors we've avoided so far. Maybe I'm being over-imaginative or letting my protectiveness go into overdrive. I'm a worrier. It's ingrained in me.

One of the sisters that lives out of town wants to help so much that I find myself wracking my brain for things she could do. But she has a number of physical and emotional/mental health issues and I don't want to do more harm than good. The other sister that lives out of town is great. One of the things that has suffered recently is my house. But she comes up and goes through it like a whirlwind cleaning it. So I find things in the wrong cabinet. The work has been done and I'm really grateful. Last weekend her husband put up a bunch of new grab bars so Mom can move around more space independently. It's made a huge difference to Mom and to me. And the sister in town has taken a regular role in Mom's care. (Mom won't let me help her with a shower. It has to be my sister.)

I don't think Mom's ready for a nursing home because she still does some things for herself, or at least makes us wait while she tries. She's a very stubborn woman, which I'm proud of, and does not admit she can't do things easily. She is also very aware of her surroundings. Yes, she sleeps a lot and gets her daughters and grandchildren mixed up, but that seems minor when I read what others have experienced. And I suppose I'm not ready either. I also don't admit defeat easily. I have three sisters who are the same way.

Mom and I looked at assisted living, senior apartments and so on a couple of years ago. But I needed to sell my house before we could move into them. It was on the market for six months and then I had to make a tough decision and just modify it to handle Mom's needs. Assisted living in this area is private pay for two years in most places, though a couple said they would shorten that time for Mom 'cause they liked her so much. And you pretty much have to have been in their assisted living units to get into their dementia unit. Mom has also had a couple of incidents recently that have made access to skilled nursing not essential but beneficial. I've been digging up information about the facilities in the area and I have a couple in mind. I know that I'll need to get on at least two waiting lists.

Mom's been hospitalized twice in the last two years. The first time for blood clots and the second when she fell and broke both shoulders. I was also hospitalized two years ago with a six week recovery. Between these events and the occasional illness or "I can't stand it anymore" single day to myself, I have barely enough leave time left to maybe handle another incident with Mom. I feel I need to keep that leave time "in the bank" for the next emergency.

I have been able to get family help so that I can go back to Weight Watchers. Pretty much from the bride in the family who wants everyone to look good for her April wedding. But time for a gym a few time a week would take an awful lot of pursuading. Still, I have lost 10 pounds (a lot more to go).

We have a family conference with Mom's doctor at the University Memory Clinic coming up in February. A lot more should come clearer then. But thanks, Lynn, for telling me how it became clear that it was time for a nursing home. That actually comforts me a lot. I hadn't even realized it, but one of my big worries was that I would make the wrong decision at the wrong time about this. And my sisters are putting this all on me, saying that it is my decision as to when I can't do it anymore. Like I'm going to give up no matter how hard it gets. But knowing that it becomes obvious comforts me, letting me stop looking for those changes in behavior that might mean the time is coming.

I'm pretty new to the discussion forum, too, having just started at the beginning of January. But there are some pretty amazing people here, you two included. The attitudes I find here, the support and the laughs do help ease the stress. I am so glad I found all of you.


Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]

Sun Jan 24, 2010 11:16 pm
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