Sunday, April 25, 2010

Alone Time

A month ago yesterday my mother came home from the nursing home where she was having rehabilitation.

As usual in such situations, the nursing home gave very little warning that her Medicare coverage was being withdrawn because she had "stopped progressing" in her rehabilitation. There was a "family meeting" on a Friday and I was informed that she had to leave by the following Wednesday, March 24, and oh, by the way, she needs 24/7 care now.

I don't mean to be cranky about this; it is the way things work, and nursing homes can get in trouble with Medicare if they let a patient stay longer just because it isn't convenient for them to come home so soon.

Be that as it may, it basically gave me two business days to set up care for my mother and make arrangements for whatever she would need when she returned to her apartment.

Luckily, with the help of information supplied by the nursing home administrator, I was able to line up overnight care for my mother through an agency, and did receive all of the necessary equipment in time for her return to her studio apartment. She needs to be on oxygen, so that included an oxygen concentrator machine, as well as a wheelchair, a walker, and a hospital bed so her feet could be put up at night.

At first I had the overnight aides coming at 9 p.m. and leaving at 9 a.m., but that meant I had to rush over there by 9 a.m. every morning, seven days a week. If I wanted to get away for an hour here or there I had to get my long-suffering husband or my aunt (who luckily lives one floor above my mother) to come Mom-sit. I am so grateful to both of them for all their help. My husband has come over to Mom's apartment and made us all dinner or we've brought her to our house and had dinner together a number of times, and he is always ready and willing to lend a hand.

I eventually changed the aides' hours to 11 p.m. to 11 a.m., which gave me back my mornings, and hired another aide privately three evenings a week so I could escape by 7 p.m. for a more normal evening.

The rest of the time I've been spending with my mother. And I'm happy to report that mentally she has improved remarkably since she got out of the nursing home. It makes me realize how important it is that health coverage for seniors should include at-home care instead of only nursing home care.

No matter how good a nursing home may be (and the one she was at was lovely and the people couldn't have been nicer) it is still not the same as being in familiar surroundings. Some people do well in a nursing home, if they're naturally gregarious and enjoy having a lot of activity around them. My mother isn't one of them. She found the ongoing commotion confusing and the soap operas her roommate favored on television made her think people all around her were in terrible predicaments. Her roommate also watched the Catholic Mass on television and I'd come to visit my mother and she'd be expecting me to take her to church. So I'm so grateful she was able to come home and is getting back to her normal self. And I'm lucky I was able to retire just when my mother needed me.

However, I had no idea how all-consuming being a caregiver can be. I figured if I did the daytime care, I'd be able to sit and blog or play on Facebook or read a book, chatting occasionally with my mother and making her meals. No such luck. For one thing, my mother's eyesight has gotten too bad for her to read, so she is only able to watch (mostly listen to) television, so I feel kind of bad reading while she can't. The other reason is that just as I might be getting into something, either in a book or on the computer, Mom has a request..."Could you please put another pillow behind my back?" or "I need to go to the bathroom." She can walk by herself but needs help.

Sometimes she'll take a nap but inevitably just as I'm settling in to watch one of my own personal guilty pleasures (such as one of HGTV's home makeovers or a cooking show) she'll wake up and want to get up again.

Mom loves MSNBC and CNN so that's what's on most of the day. I am now more well-informed on political issues than I ever was before. And I'm grateful that she is into politics because we have that in common and now that she's coming around again mentally we can discuss the issues, and it's great.

But the only problem is these programs are all covering the same Big Stories every day, multiple times. One day they kept showing a speech by Sarah Palin campaigning for John McCain that nearly drove me insane. If I had to hear her screechy annoying voice once more I might have lost control. I finally had to switch to a public television station and watch a cooking show, much to my mother's dismay.

The other thing that takes up a lot of time is dealing with the comings and goings of the aides, and the visiting nurse who comes twice a week but I never know when until a half hour before when she calls to say she's on her way. Plus there was a physical therapist who came three times a week for the first month. And on top of that I had to get Mom to two different doctor appointments during this past month when she was still quite unsteady and needed the wheelchair.

At first I was doing fine with all of this, but then it started to wear on me and as my mother got better and I was no longer expecting her to die at any moment, I found myself getting cranky to her by the late afternoon, and then of course feeling really guilty about it.

I found the cocktail hour was getting earlier each day. I'd go home for an hour while my aunt sat with Mom and I would walk the dog and then sneak a glass of wine on the deck, sitting in the sun. Or I'd bring a bottle over to Mom's and have two or three glasses of wine while she'd have her evening sherry, which she is now able to enjoy once again. I'd get an evening off and go out with friends and drink way more than usual just to de-stress.

I started having trouble sleeping, waking up in the middle of the night confused, worrying about my mother, sometimes not even sure if I was in my own house after being at her apartment all day.

I finally realize what my problem is - I'm not good at being with anybody all day long. I was brought up as an only child and I need my alone time!

So I'm finally having some this weekend. I managed to get two aides to cover the daytime with my mother, and the usual overnight aides are covering the nights. And we headed off to our cabin in the Adirondacks for three nights.

On the way up Route 22 from Whitehall to our turnoff there was a large male turkey in the middle of the road, strutting his stuff, showing off for a modest female who was at the side of the road, studiously pretending to ignore him. We had to wait while he ambled off the road.

Then came the turn toward our cabin, and then we were going up the familiar gravel road. As we pulled into the property in the early twilight we saw our personal Great Horned Owl fly across the pond from one tree to another. Later that night we heard him calling in the woods.

This weekend was the first time we were able to get to the cabin since the first weekend in December, and we were pleased to find it just as we left it. No one broke in, no trees fell on it, and it didn't burn in our absence. Within a half hour of arriving, we had the propane flowing, the generator generating, the well pump pumping, and the water running.

We've managed to have beautiful weather even though at home it is now raining. Somehow we always manage to get lucky with the weather.

Ed's dad joined us on Saturday and he has been enjoying his own escape - from visiting the nursing home where Ed's mom is every day, twice a day. No matter how much you love someone, you need time away in order to get back to them again with your patience intact.

When I return to the "real world," I'll need to reconsider the care my mother is getting, as the expense is untenable. We will be getting her on Medicaid shortly, but it won't cover the amount of care she has been receiving.

Somehow there has to be a balance achieved between leaving her alone some of the time but not endangering her welfare. I don't know yet what that balance will be. As she has improved I think she may be able to stay alone at night but won't know until I stay there myself and see how she is.

Long-term care is another area of our health care system that desperately needs reform. As the Baby Boomers age, I am hoping our generation will take on this task because you know we will not be willing to go gentle into that good night without making some major changes in how we are treated on that last journey!

Naturally from my constant exposure to news programs over the past month, I have a lot of fodder for commentary here but first wanted to let you all know why my posts have been so few and far between.

I am incensed about the new immigration law in Arizona, am glad that President Obama will get to appoint another Supreme Court Justice, and have lots of other opinions on various subjects to share. Baxter too is waiting patiently to get his turn to blog, so either he or I will be back soon to do so!


lisahgolden said...

What a great post. I know it's hard, but you've done a great job illustrating how elder care is important and what a toll it can take on the caregiver. The alone time is incredibly important. Please be sure you don't scrimp there when you address the changes that are still to come.

D.K. Raed said...

Looks like your mom proved the nursing home wrong in saying she had "stopped progressing" because she has continued to improve at home.

I assume you've contacted your state's elder care dept. When we were going through this with my mom (alzheimers), they were a good source of info. Do they have a nice senior day-care center in your area? If your mom can handle it, it might provide you with a few more hours to yourself during the day and give her a small social outlet.

You should not feel guilty about needing time for yourself. This is serious ... think about your sleep disruption and realize what that alone could do to your health ... it's a fine tightrope to walk ... feels like a box or heavy heavy weight ... no wonder you were gulping more wine!

Sounds like the cabin weekend was just in the nick of time. It'll give you a little space to recover, rethink and reorganize care for your mom.

Hey just think how much worse it'd be if your mom was hooked on Fox. Sorry, Maui ... just trying to give you a smile.

Fran said...

Oh Mauigirl! This is really hard stuff - really hard. And you are doing such a great job for your mom.

It is important to have alone time; I totally get that from my own experiences of this from some time ago.

Glad you got to the cabin! One of these days we will find a way to connect.

Sending you good thoughts, wishes and prayers always.

And don't get me started on AZ. BTW, Dcap has an excellent post up about it.

Going Like Sixty said...

Tough times.

As D.K. Raed said there are usually state or local agencies, charities, support groups, churches that will give you some time off once in a while.
You MUST reach out to these people.

As D.K. said, your mental health is important. You (and your marriage) are under extreme stress.

Would your mother listen to podcasts or music via earphones to get her weaned a little from television?

Talking books? DVD of old TV shows or movies she might remember?

Remember: you are not the first to have these issues.
Best wishes and continued strength!

Liz Hinds said...

I agree with lisa: you've done a great job setting out this issue. The balance between wanting to care and needing time to be yourself is a precarious one and that's before you add guilt into the equation.

Your mum is very fortunate to have you, and I hope you manage to make some arrangements that fulfil - as fas as possible - everyone's needs.

Spadoman said...

WOW! Does this sound familiar. My Mom passed recently. I live a long distance away, so I didn't do the direct care, but my sister did and am I ever grateful to her!
Mom was in her own apartment until my sister was going over there four and five times per day and spending many nights. Luckily, sis had enough room in her home and moved Mom there.
Hospice was done right in my sister's home. I traveled down the 400 miles every week for over a month, and spent a few days each week. I ws with her when she passed and I know my Mom appreciated being home.
It is a hard task, and the folks who commented earlier are certainly correct, you deserve, (and need for your own mental and physical health) time away. Lucky you have the cabin in some respects.
For what it is worth, the best positive energy for your situation is sent your way.


amadmike1 said...

Hang in there and this was a very eye opening post. Thanks for sharing with us.

Randal Graves said...

I think most people have a rough idea of just how much time and effort goes into caring for someone who requires around-the-clock, but being (and dealing) ready mentally is huge, huge, huge. Best of luck to you.

jmsjoin said...

Hi Red!
M I am peeved over that Bill and that McCain and others are blaming Obama for its necessity. Heck he has been their Senator for almost 30 years.

Anyway as you know now, being a full time care giver is a full time job and then some. I did it for my father. Any time you can buy, it is worth it.

We just had 4 in a nursing home and now it is just my mother in law. Take whatever time you can get for you and your loved one. Take care!

Fran said...

This is a huge life transition. One MUST care for the caregiver, or you wind up with empty pot syndrome. You keep ladling out care, but you have to replenish in order to have time, energy and stamina to continue to be a part of a support group. It takes effort to put it together, but regular rotations are needed.
I have relatives wrangling w Medicare--- they only cover X amount of post op rehab, but if that person's needs have changed, perhaps their medical status or coding needs to be changed so more is covered.
Tap in to all the resources available, recruit all who you can to help, and take care of yourself too!

TomCat said...

Mimi, I hope you enjoyed your vacation. You're mom id fortunate to have raised such a fine daughter.

PENolan said...

This particular post is a fine example of why I just passed The Honest Scrap blogging award on to you - for writing brilliantly and passionately from the heart.

La Belette Rouge said...

As an only child of an 84 year old mother I read this post in a very personal way. My mother broke her back a few years ago and I was responsible for her care. Never have I known what it is to be totally responsible for a dependent adult. It was exhausting. I am so happy you were able to find good people to help lighten your load. Be sure to keep taking good care of yourself as you take care of your mother.xxoo

Life As I Know It Now said...

One of the employees at the library is also taking care of her mom, who is in her nineties. She brings up many of the same issues you do here. Mainly, she wants help from her siblings so that she can get some time away for herself and to spend time with her adult children and grandchildren. I admire her for her dedication to her mother, making sure she is as happy and as healthy as she can be, given the situation. I admire you too for the same reasons. Remember to take care of yourself so that you can also take care of the others in you life. Peace.

Mauigirl said...

Thank you all so much for your comments and suggestions. I am overwhelmed by everyone's good wishes and thank you all from the bottom of my heart.

Once I get Mom on Medicaid I will also be looking in to the Division on Aging in my county, which is also supposed to offer help for home caregivers. I keep meaning to call them. I wish they had a website you could interact with! I so much prefer doing things on line!

DK, you did give me a smile with your comment that at least Mom isn't hooked on Fox News! I am grateful that she and I share the same political viewpoints.

Thanks to all of you about the advice to be sure to have time to get away. We stayed 4 nights at the cabin and it was a very welcome respite! I think as long as I can get up there often, even if we bring Mom with us, it will help. I also make sure to run out and get my pedicures regularly - they are my indulgence!

I had gotten some books on CD for Mom awhile back so will try putting them on for her soon.

Tricia, thanks so much for the Honest Scrap award, I'll be over to collect it!

Thanks to those of you who have also shared your own experiences - and I send my admiration to you for what you've done for your loved ones as well. It is not easy but I feel as if I kind of failed my dad when he was in the nursing home - I was working at the time and Mom went to see him every day so I probably didn't go as often as I should have. I vowed I wouldn't do the same to my mother.

Fran, yes, we must get together now that it's "cabin season" again!

Christopher said...


You mother is so fortunate to have a daughter who cares for her as much as you do.

This is a very challenging and difficult thing to handle. There are no perfect answers or solutions when it comes to caring for an aged parent or grandparent.

It seems our entire society is set up for youth and then in a blink of an eye, 75 years have passed and then what?

TomCat said...

Happy Mothers Day!

Mimi, I hope all is well with you and your mom.

WordDoc said...

Exhausting to be a caretaker, but how precious (maybe more so in retrospect when burnout looms in the present) to have this time with your Mom. You are a gem to your Mom!

Julia said...

I love that your blog supports gay marriage. Lot of people support it, but don't have the courage to say it.

AMIT said...

Hope that your mother is fine enough now.

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Mauigirl said...

Thanks, everyone, for all of your support.

Hope to have time this weekend to write a new post - heading up to the cabin for some R&R!