What to so when mom refuses assistance?

Groundzero, I empathize with you and the many other caregivers in our situation, some of whom have commented here already. I'm an only child, divorced without children, in my late-40's, and, for the past few years, have been fluctuating between part-time and full-time caregiving for my parents, as needed, while enduring considerable upheaval in my own life, including job loss, selling my home, putting virtually all of my belongings into storage, and renting temporary housing with merely a carload of belongings with me while searching and hoping for new employment closer to my parents, who lived six hours away. Then, early last year, for most of the year, I unexpectedly became a 24/7 live-in caregiver for both parents. I was always a good daughter but never a better daughter than during this time...and never more emotionally abused. The more and better I did for them, the worse I was treated, especially by my father. (He's a narcissist (and getting worse with age), she's a passive-aggressive and co-dependent, together they're experts at FOG (fear, obligation and guilt), and I'm "overly sensitive," always walking on egg shells around them, and always looking to please them and disappointed that I can't.)

Eventually, my physical and emotional exhaustion became unbearable, and I was forced to reach a very difficult decision when my parents refused my repeated pleadings to let me hire some third-party help. In short, I looked for temporary housing nearby and, upon securing such, told my parents that I love them but was no longer able to care for them as I had been doing. I explained that I would move out the following week but would still help (as opposed to "care for") them up to but not exceeding 10 hours per day, and that I would be reducing my hours further over time. I then handed them copies of the information that I had gathered about local caregiving service providers, including my notes, and offered to make all the arrangements for them when they decided on an agency. As expected, they refused such services, but I stuck to my plan, starting with moving out.

Things started to improve as they reclaimed their lives and I was able to resume my job search. Two months later, though, first one and then the other parent ended up in the hospital followed by stays in a rehab. facility, during which 1.5 months, I was back in full-time caregiver mode, albeit not overnight. A few days before my father's release, I told him that I was arranging their respective in-home physical and occupational therapies and that I wanted his input regarding in-home caregiving services, assuring him that I'd be on hand but couldn't give them all my time anymore. By now, it was early-2012 and finding work became increasingly more critical. When he became confrontational, I took a deep breath before stating that he had two choices: work with me or I'd leave the state by month's end. With only a car load of belongings with me and the rest in storage, he knows just how mobile I am and, seeing that I wasn't bluffing, he made a wise decision. So, as one parent after another came home and started their PT and OT, and with the in-home caregiving service in place (mornings, daily) when my mother had returned home and settled in, I pulled back to let the new daily routine take hold but always on the ready when/as needed. All went really well for three weeks and just as I was starting to relax and sleep better again, they canceled everything, claiming it was just too much having all these people coming and going all the time. Predictably, within a few days, they tried to guilt me into stepping in again. As difficult as it was, I remained firm, reminding myself of what they had put me through emotionally and reminding them of my need to find work and that they had made a choice about the caregiving service which they could either live with or undo. Well, it took a couple of weeks or so, but they resumed with PT; it was something, and it helped.

Two months later, I stepped in as full-time caregiver again for a few days when my father had minor elective surgery but, less than a week later, left the area for a three-month consulting assignment on the other side of the state. I was relieved to be earning a paycheck and to return to a life of quasi-normalcy, but I was also constantly worried about my parents. We spoke a few times per week, but I only visited twice, wanting them to figure things out in my absence, which they did. Not only did they hire a cleaning lady, but my father even started attending monthly men's caregiver support group meetings (which I'd given up on asking him to do when I left this spring), and my parents had even reached the decision that it was time to sell their house and move into a retirement community, having found one nearby with all care levels that they really like and that would still take my mother as long as they are able to live in their own home in the months prior to their move-in. What a difference three months can make! A couple of weeks after the completion of my work assignment, I returned to their town last month on the condition that they accept that my primary purpose is to find work, suggesting that I spend one day per week with my mother to give my father some respite time and to help here and there when truly needed. They accepted this and, so far, it's worked out well (despite an occasional attempted guilt trip).

It feels good to have found the strength to, finally, have set healthy boundaries with my parents and to have made some very difficult decisions that didn't look so good at the time I made them out of necessity but which turned out to bring about some positive change for us all. While plenty of challenges remain and, certainly, lots more lie ahead, I'm grateful for the changes that have occurred in recent months. Groundzero, I really hope this helps you figure out how to get your mother to accept some third-party assistance and hope that you will not let her control your life with her fears, stubbornness and increasing cognitive decline which can and likely will lead you down the path into the dark abyss where I found myself before, well, rescuing myself from it. I wish you all the best with finding solutions that work for you and your mother.

It's just like with little kids - do you try to protect them from themselves or let them make the mistake and maybe get hurt. Unfortunately, with the elderly, I think the consequences might be greater and longer-lasting.

groundzero, I get the feeling that quilt is a big underlying issue in most of the questions I read about elderly relatives. You are doing the best you can if you are giving your mom good advice and the best emotional and monetary support you're capable of giving. I came to the realization pretty quickly that I wasn't going to argue with my aging mom if she was unwilling to take what I have to offer. Don't beat yourself up. Do the best you can for your mom while holding on to your life. I wish you well.

groundzero, I'm living this right now as well. I did move in with my mom (fat lot of good THAT did, she still won't eat, won't listen to me, etc., etc.) and she just developed yet ANOTHER urinary tract infection (4th in three months) that altered her enough that she went outside at 3 in the morning to water her flowers.

Of course, she fell, broke her collar bone and landed in the hospital...again. And also of course, she didn't remember that she was wearing her pendent and didn't push the button (it was apparently a "soft fall" so the automated feature didn't trigger). Now she's in a rehab center and doing so well, now that the UTI is clearing, that she'll probably be released to home way sooner than I'd like.

The only sort of good thing to come out of this is that she's now starting to talk about "someday" when she wants to "check in" to a facility of some kind, that she wouldn't mind so much being where she is.

And I don't have a clue what I'm going to do when she comes home. None. I have to say - I'm soooo enjoying having her "out of my hair" that I think I'll really resent it when she comes home. I'm just so tired of fighting with her about eating, about not just walking down to the mailbox when she feels like it, taking a shower, etc., etc., etc. I'm hoping the social worker at the rehab facility will have some ideas - but, of course, just like last time, my mother will "yes" the social worker to death and then do as she pleases.

jeannegibbs: I did what you did, after my mom's fall and hospitalization back in late January. Worked a charm - I talked to the woman going into the house weekly, reminded her to go over my mother's calendar with her so she knew what doctor appointments were coming up, had her call the doctors' offices to make sure there wasn't an appointment that didn't get put on her calendar, asked her to clean, etc.

As I say...worked a charm...until my mother ended up with another UTI, was altered, actually got violent with the woman coming in, and the agency quit. That's when I quit my job and moved clear across the country to move in with her because I knew she'd accept me living with her.

But, boy, am I tired. And frustrated. And totally in the dark about what to do in the future.

When I read your letter I was amazed, you could have been talking about my situation, except mom now lives in my home, right down to the fall and fractured pelvis. My mom refuses to have outside help of any kind also. I have to beg my children to help me transfer her to the commode, ( I am lucky they will). I can't offer any answers as I am in the same boat and haven't found any for myself either but you are not alone. I just talk to myself alot about her loss of dignity and independence and take a lot of deep breaths.

I am long distance and my alcoholic father refuses any outside help. He won't let me visit; lives in a retirement community with a security guard and won't let anyone come in except my brother who apparently has abandoned him.

What can you do? Maybe not as much as you hope you can.

My sisters recently increased the amount of inhome care my mother (92) receives, basically by tricking her into accepting it. She has an aide coming in 2 hours for 2 days a week. But so far she has only allowed the aide to watch television with her! My sister called the agency and explained that Mother told the aide that she doesn't need any help. The agency woman laughed. She said, "Every single one of our clients insists they don't need help. Give us the list of task you want done, and we'll get them done without upsetting your mother."

If you are creative and lucky MAYBE you can get Mother to agree to "a maid" because she deserves a little retirement now. Unfortunately it may take a crisis (such as a fall) to bring the issue to a head.

Keep trying. And good luck!