What can I do to help my mom in her new role as the full-time caretaker for my ailing step-dad?

February 17, 2008 4:16 PM

What can I do to help my mom in her new role as the full-time caretaker for my ailing step-dad?

My 77-year-old step-father has been in and out of emergency rooms and hospitals since August due to various causes that as of yet have not been pinpointed. Before that, he had the energy and health of a man 30 years his junior, but now he is mostly chair-ridden and can only move using a walker, albeit with much much pain. The burden of his care has fallen solely on my healthy energetic 62-year-old mother, as my sister and I and our step-siblings do not live in their area. My mother and step-father have taken advantage of the best medical facilities and at-home-care that are available. They have the insurance and the means to pay for the costs of all the care that they have been receiving thus far, so that is not a major cause of stress at this time. MY biggest concern is the effect all of this is having on my mom.

As you can see, she is younger than my step-dad and knew the day would come that she would see her husband age into a frail man. Trouble is, she did not expect for his decline to happen so quickly and without a clear cause, and she is pretty much freaking out and running herself into the ground. At this time, we are fairly certain that whatever is causing his pain is not terminal, but he is constantly suffering nonetheless, and my mom is suffering right there along with him. My sister and I are trying to visit as much as possible because they live within driving distance, but neither of can take as much time off as we would like (his children are not within driving distance, but are also doing all they can to help). We are trying to help out by taking turns with monthly weekend visits, but that does little other than give our mom a sounding board for a couple of days.

My mom has already enlisted the help of nurses and various friends and neighbors, and has created a little reserve army of people to help her if/when she needs it. She is hyper-organized and totally on top of her shit in all areas regarding my step-dad's care. She is strong headed and will not be convinced to slow down or relax, so I am looking for something more concrete than just remembering to call and giving her encouraging words (which my sister and I do every day).

I would like to think of ways to help reduce her stress or help her to better manage day-to-day when we can't be there to give direct assistance. My sister and I have very little expendable income, so elaborate spa-day gifts are not really possible. Also, she is not likely to allow herself to relax that much anyway, as she is and always has been a very high-strung woman. I suppose I’m looking for little inexpensive ways to make her day a little bit better. Are there things you appreciated or wish you had had when you were a full-time caretaker? Are there books that you read that helped you in some way? Any kinds of suggestions are welcome. I just want to make my mom’s life just a little bit easier somehow.

posted by greta simone to human relations (11 comments total)

I am a full-time caretaker for my mom.

The problem with it is that even if you did get her a day-spa thing, if she's anything like me, it'd be very difficult for her to relax and enjoy it. I occasionally leave my mom with my brother and go out, but I generally feel so guilty and worried that I don't really have a good time, and I tend to come back early.

The times that I really do have fun are when I get the guilt removed another way. For example, some friends needed me to emcee a show as a last-minute replacement. I went out, saw my friends, had a good time, and genuinely enjoyed myself, because I was "helping" and therefore didn't have to feel guilty like I would have if I'd just gone out to give myself a break.

So you might pull that trick. Tell her you "need" her company or advice for an outing she'd enjoy while your other sister stays with your stepdad. Or just stay with him so she can run some needed errands, like shopping or getting her oil changed. Just getting out of the house helps.

For that matter, sometimes just coming over and saying "I'll sit with dad, you go take a nap" is the best thing on earth.

You might also get her some fun things she can do without leaving his side. Good movies they could watch together, games for them to play, books, puzzles.

If it helps, the thing I want more than anything in the world is just a day off to do whatever I want to do, uninterrupted. Even if I don't go anywhere or do anything cool. Just a day without fending off bossy relatives and dealing with medical people and jumping up to fetch more tea. I just want to... putter aimlessly. However, I'm a lot more burnt out than it sounds like your mom is at this stage.

Oh, and food. Food is good.

Not sure if your mom is an animal person or if she'd consider it just another bother to take care of, but my cats help a lot. Playing with them and watching their antics is pretty much the only time I laugh in a day, and laughter will keep you sane when you're in a situation that sad.

Best wishes for you and your family... hope any of that helped.
posted by Gianna at 5:22 PM on February 17, 2008

My mother cared for my father for five years after his diagnosis with Mesothelioma before his death a year ago. She is the same age as your mom.

I came in this thread to tell you exactly what Gianna just said. Give an "excuse" - those were the best ways to get my mom out. Often it required teamwork between my brother and I - he would take her out and I would care for Dad or vice-versa. Sometimes we both would take Dad to the doctor and she would stay home - actually that was pretty rare but the times we did do it seemed to help, especially since they lived in the Northwest suburbs of Chicago and his doctor was on the South side of Chicago so it was a bit of a long trip.

Mom's friends were a huge help. I don't know if you can speak with any of your mom's friends, but for us, a short conversation - we want Mom to get out a bit and we are happy to stay with Dad, can you give her some opportunities? - really worked wonders.
posted by MeetMegan at 5:47 PM on February 17, 2008

encourage her to ask for help and take it. It took us a while to convince mom to take the offer of the ladies from church to sit with my Grandma for an hour or two just to give her a break every now and then.
posted by meeshell at 5:54 PM on February 17, 2008

I have seen this sort of situation happen a few times in my own family and the above posters have it; give your mom a break, but set it up so she doesn't feel like she is letting her husband down. In addition to giving her some time out of the house, that may also involve you coming over and cooking dinner or otherwise keeping her (and him) company; even with her army of supporters, she has taken on a 24/7/365 job and may feel isolated even with a good deal of help.
posted by TedW at 6:43 PM on February 17, 2008

I appreciate the advice so far. i am aware that a 'break' is best, but my sister and are not able to provide this for her. Our schedules don't really allow for us to travel to our parents' place often and we can rarely be there at the same time. My mom has plenty of help in the form of friends and neighbors, and she also has a cat. Actually, everything is kind of ideal for her right now in terms of having what she needs to best care for him.

I'm looking more for concrete things, something which perhaps she doesn't know that she needs but will help her. Something like a 'lazy susan' of care-taking. Or a book that can give her more insight into her role, without being too self-help-y. I just want to be able to help from afar by perhaps giving her something to make life a little more simplified, and happy, for her.

I would love to give something to both of them to enjoy together, but my step-dad is at a stage where he can't do more than sleep in his chair all day and muster up a little bit of energy in order to eat a meal. He pretends to watch television, but he doesn't realize that we know the volume is too low to hear it (he is rapidly losing his hearing, but refuses to admit it) and his eyes are closed.

Perhaps I am asking too much, seeing as how she does have everything she needs. I just want to make sure I'm not overlooking anything.
posted by greta simone at 6:45 PM on February 17, 2008

and I*
posted by greta simone at 6:45 PM on February 17, 2008

My mom was care-giver to my dad before he got to be too much for her (he has dementia and is wheelchair-bound; Mom is a very petite woman and all the physical stuff was so hard on her) and she put him in a care home.

Gianna is on target with a lot of the things you can do. Especially, if your mom is up to caring for a pet, a dog or cat - perhaps better a cat as they are more low-maintenance - can be so soothing and such good company for the caregiver, as well as the ailing person. My mom's dog saved her sanity, and I don't know what Mom would have done without her, and she kept Dad company, too. If you do decide on a pet, get an adult animal from a shelter; a kitten or puppy is a bad idea.

My mom is not a spa person, either, but she liked it when we would go to movies - lighthearted romantic comedies and the like - and out to lunch. If your mom is a reader, perhaps she would appreciate some cozy mysteries or other light reading. Does she have a DVD player? If she doesn't have a subscription to Netflix, that might make a nice gift.

I would also help Mom out by doing some of the household chores she couldn't get to. Grocery shopping, watering the plants and so on. She had a cleaning service come in every other week. Maybe the "kids" could chip in and get Mom a housecleaning (check Craigslist for housecleaners near you).

Finally, what Mom always told me was that above all else, she just appreciated my company. I'd go over on Sunday mornings, bring pastries, make tea and we'd have breakfast and read the Sunday papers together. Even if you can't help out with gifts, your physical presence and so on, just letting your Mom know you care about her by keeping in touch is invaluable.
posted by Rosie M. Banks at 6:52 PM on February 17, 2008

Even if your step-father can't hear the movies, a subscription to Netflix or something similar and the occasional pizza/Chinese/other delivery and/or some popcorn might provide a little escape without them leaving home. As Rosie M. Banks said, keeping in touch is the main thing (you may be surprised how many of their friends will drift away rather than confront your stepfather's illness).
posted by TedW at 7:07 PM on February 17, 2008

My mom is a social worker who specializes in geriatric care. She supported all my grandparents with their own aging process as well as their spouses' while on opposite sides of the US.

One thing you could do for your mom is try and find a support group for her so that she can communicate with other people in a similar situation. I know that local chapters of the Alzheimer's Association often have support groups, but it doesn't sound like your stepdad has dementia. Their helpline may still be a good resource for services in her area.

The other thing you could do for your mom is research adult day care centers for your stepdad. Adult day cares have all kinds of activities that he could do for an afternoon so she can have some time for herself. This website seemed like a good place to start. Local hospitals, nursing homes and community centers are probably worth getting in touch with as well.
posted by easy_being_green at 9:03 PM on February 17, 2008

If the cause of your step dad's illness is still unknown, I'd get on top of finding the best specialists/hospitals in his area and the country to try and get him a diagnosis. It takes a lot of time and patience calling and emailing doctors and specialists, but you can get a lot done and ultimately it might make all the difference. Things like this need to be pursued aggressively and having a strong and informed advocate is important.

My mom (who admittedly was a research librarian) did this a long time ago for a relative who had a really rare form of breast cancer, it took forever to properly diagnose and then finding the right doctors was key. I know the research my mom did was a big help. Also, even if you can't be of much help getting a diagnosis, finding him a top notch pain clinic to properly deal with his pain is really important.

I realize your question asks what you can do for your mom as a caretaker, but I think taking some of the mental weight off her shoulders in this regard can be really helpful and any improvement in your step dad's health will also be a big relief to her.
posted by whoaali at 9:36 PM on February 17, 2008

My mother is now 86 and my father died in September. She cared for him for 3 years before he died. She refused to put him in a home even though it was increasingly hard on her. I called her twice daily and visited her once a week.

I always tried to plan something we would do together so she would have something to look forward to. I hired a personal chef for her so that she wouldn't have to cook meals, but she prefers her own cooking. She had a physical therapist coming in a couple of times a week to exercise my father.

She also may get to the point where she needs to purchase expensive medical supply items like a hospital bed, a wheelchair, walkers, etc. Help her find good deals on them. There are tons for sale on Ebay or Craigslist. If you buy them in a medical supply store you will pay 4x as much as you would finding the item for sale from a private party.

My mother went to a couple of support group meetings but it wasn't for her. I will echo what others have said that anything you can offer in the way of cheer and lightness and company will be welcome. I gave my mom a subscription to the Sun Magazine and she found it to be a great distraction for her...real stories.

My heart goes out to you both. Give her as much love, attention and encouragement as you can muster. Go out and do some adventurous things so you can tell her all about it when you get home and she can live vicariously through you. Send her lots of pictures and postcards through the mail, and the occasional mail order gift.
posted by livinginmonrovia at 3:39 AM on February 18, 2008