Is Anyone Listening?

I don’t blame you if you’ve decided not to read this blog. I understand. After all, it’s been two months since my last post. I got out of the habit of writing. I haven’t felt like it even though I know that writing would ease some of the pain I’ve been in. Not all of it though, since some of it is physical and using my right arm/hand can be painful.

Now that I have your attention, the physical pain is caused by a massive rotator cuff tear as well as a tear in the bicep of my right arm. I am right-handed. I am a church organist. I am the caregiver for my parents. I am the driver for my parents. I am not on any pain medication other than the anti-inflammatory I take for my arthritis. I’ve been using ice and Extra Strength Tylenol to help cut the pain. This is the injury that happened in early November, the one I had a cortisone shot for and that I went through physical therapy for. I don’t know when the bicep tear happened, but it’s possible it happened at PT when they added weights.

As for the other pain, the mental/psychological pain I’m going through, well, I learned two days before I had the MRI that resulted in the above diagnosis that my dad has Alzheimer’s. The psychiatrist at the VA GEM clinic told us that when she examined him. I had called the day before the appointment and requested that one of the doctors explain to dad why they took away his driving privileges. That is the reason.

I was surprised and not surprised. After all, my aunt, his sister, had it, and the changed I’d noticed in him were troubling enough to make me think something like that was going on.

The biggest problem now is to get mom and dad to agree to a move to assisted living and to move right away so that I can get the surgery I need. Even then, things will be delayed because I need someone to come help me through the first weeks of recovery and that means coordinating my schedule with my sister’s schedule. I hope it happens soon because I’m tired of hurting.

Just thought it was time to check in and let you know what’s up in case anyone is still out there.

Published in: on February 26, 2011 at 5:37 PM  Comments (5)  

Sometimes It’s Lemonade, Sometimes, the Juice Burns Your Eye

Guess what it has been for me recently?

I know I’ve been AWOL for over a week now and I have only myself and life’s little problems to blame. Doctor appointments for me, mom, dad, physical therapy for me, running errands for mom and dad, trying to get ready for Christmas, playing for Advent services, and dealing with a case of extremely dry skin on my hands. But what I had to deal with yesterday topped everything.

Yesterday was supposed to be the day I practiced for today and the upcoming Christmas Eve services and next Sunday. The day I was going to clean house and do some baking and some decorating and my laundry. Then, at 11 o’clock A.M. the phone rang. It was dad asking me to come over because he’d had an accident. So, I dropped everything, put on clothes I could wear in public, and drove over there.

The accident actually happened on Friday probably right around the time the sun was going down. Per dad, someone hit him on the left side of the car. Dad is OK. The car is not. He wanted to go see it and talk with the people at the garage where the cops had it towed. Of course, dad didn’t remember the name of the garage, just that it was in his hometown and “near where he used to live”. Very helpful if I had been there at the time, but I wasn’t around then.

We found the garage, it was open, and we got to take what few things dad had left in the car home. Then it was to the bank and the grocery store and pharmacy. Then I had the singular joy of talking to dad’s insurance company. Lots of time spent with automated menus while mom and dad were both asking me “Maybe no one is there?” or “Aren’t they answering?”. I finally got a person to take the info on the claim, but I didn’t have all the info. One thing I didn’t know for sure was the name of the police department that helped dad because he didn’t remember. I also didn’t have any information on the other driver or drivers because dad said the person who hit him drove away. I don’t know if there were any witnesses, either.

The insurance company wanted us to use one of their approved garages to get faster service, but dad wants to keep the car where it is. Actually, I didn’t ask him about this since I was afraid that the approved garages might not be as conveniently located and it would mean more driving for me. The company also asked if he wanted a rental car. I told them that we hadn’t talked about it. (The last time dad had a rental car, he wrecked it and his insurance had to pay.)

After all this, I had to make them lunch since they had not eaten. Never mind that I hadn’t eaten either. Neither had I made it to Weight Watchers last week. (The WW week begins on Sunday, so I missed a week.) I could not fit in a meeting. I had planned to run in to get weighed yesterday. So much for the best laid plans.

I mentioned extremely dry skin on my hands. That’s the topic for another day. I can report on my visit to the dermatologist and the the lifestyle changes I am making because of it.

Right now, I’m trying to figure out how to get everything done so that I can be provide people with a meaningful Christmas Eve worship experience when all I want to do is go hide in a heated, furnished cave with indoor plumbing, Internet access, and HBO, for about a month. And, please, Lord, no snow on Christmas Eve since I’ll be out there driving in it. Thank You.

Published in: on December 19, 2010 at 7:45 AM  Comments (2)  

Lessons in Frustration

I wasn’t planning on writing about this, but circumstances overtook intentions. I was going to focus solely on the pain in my shoulder. After all, I have yet to see the doctor about that and, after a normal weekend, it is bad again. Driving to two churches and playing for two services really ramped up the pain. But, instead of being able to rest it, I had other things I had to do.

Hence, the frustration. My dad had been harping on the need to take his care for an oil change and a check up. What that meant was he wanted me to call someone and make him an appointment to do that. So I did. He was scheduled to be at the Honda dealer at 9 A.M. yesterday morning. On Sunday afternoon while I was visiting, I asked if he’d like to drive the car to the dealership and leave it there so it would be done by Monday afternoon. He said that he’d remember to go in the morning.

Monday at noon, just as I was getting ready to start cooking my lunch, tummy growling in anticipation, the phone rang. Guess who? Guess who was ready to take his car to the dealer for the oil change, etc? Guess who wanted me to go along? So, instead of eating lunch, I got into my car, drove to their house, drove to the dealership with dad following me (he didn’t remember where it was), drove him back home, and drove myself home. I ate lunch three hours later, at 3 P.M.

Last night was the next to last session of my fibromyalgia/stress relief study group. My arm/shoulder was killing me by this time, but I was determined to go because I like these women and I think that, if I actually practiced some of these techniques faithfully, they would help with my pain levels. But, I did not want to drive in the dark with a sore shoulder. I ended up going and, although I spent the entire evening in pain, I did enjoy myself.

I got home, did some unwinding, and went to bed. At 2 A.M. my phone rang. It was dad. He wanted to know when we were going to get his car. I explained to him that it was the middle of the night and that I have a doctor appointment in the morning (all true) and would not be able to help him till the afternoon. Of course, I’d told him that yesterday when I dropped him off at his house. It turns out that he called me five times last night while I was at my fibromyalgia group meeting. I didn’t get home till 9 P.M. and since I was so tired and sore, I didn’t check my answering machine. If I had, I might have been able to prevent this middle of the night phone call, but maybe not.

All I want to do now is scream at the top of my lungs or whine to whoever will listen and even to anyone who won’t. I’m tired. I’m in pain. I don’t have it in me to care for others right now because I need to care for me and yet this is my dad and my mom. They raised me. They did for me when I wasn’t able to do for myself. I don’t believe I have the right to refuse them.

Next up, the report from the orthopedic surgeon and what it means for Thanksgiving and beyond.

Published in: on November 16, 2010 at 7:09 AM  Comments (2)  

That’s Me, Sort Of

The November/December 2010 issue of Weight Watchers Magazine is all about preparing for the rapidly approaching holiday season. I normally gloss over the articles since they tend to focus on people I can’t relate to – busy mothers or young men and women just starting out in life and dealing with weight issues in addition to a job hunt. But this issue has an article about caregivers and the unique weight loss and health challenges they face. Needless to say, I stopped to read this one while paging through the magazine in search of new, WW-friendly recipes.

The article, by Ginny Graves, detailed three steps all caregivers should take to get or stay healthy. Graves advises readers to learn their own limitations so that they don’t become totally overwhelmed. I can definitely relate to that. If you’ve read earlier posts, you know that I have fibromyalgia and that overdoing things only makes my condition worse. And, naturally that means I can’t do as much for my folks, which makes me feel guilty. Sharing the burden helps, but there isn’t always a way to share. My sister wants to help, but she lives several hours away and can’t be here for the day-to-day care. I send her emails almost every day detailing what I’ve noticed or what the doctor said, but it often feels as if she’s the boss and I’m sending her progress reports. Yet another source of frustration for me.

Graves called the second step owing the role of caregiver. She cited a study by the National Family Caregivers Association that showed the vast majority of caregivers were “more proactive about seeking resources” once they acknowledged that they are caregivers. This is true. I realized that something had to be done before I ended up in the assisted living facility I’d like to see my parents in. At that point, I sought help from the county’s Area Agency on Aging and the Veteran’s Administration. I just wish I could convince mom and dad to accept more help, for my sake if not for theirs.

Finally, Graves reminds all of us to remember ourselves. This is a common theme in Weight Watchers meetings as well as in many self-help articles in magazines. We all give lip service to the fact that you can’t help someone unless you help yourself first, but how many of us actually follow this? Think about the card in the pocket of the airplane. The one that explains what to do when the emergency oxygen mask comes down from the overhead compartment. I haven’t flown for a long time, but I seem to remember that it said that if you are traveling with a child, you should put on your mask first and then help the child put his or her mask on. I need to remember that.

I have contacted Ms. Graves and plan to pick her brain on this subject next week. Stay tuned for a follow-up.

Published in: on November 5, 2010 at 2:53 PM  Comments (2)  

Meditation on a Painting

Last week’s assignment for the journaling class I’m taking was to write a short essay on an emotion evoked by the Edward Hooper painting, Hotel Room.  I thought I’d share what I came up with since it does touch on my focus of my blog.

The emotions I listed are :







Here is what I wrote:

I had to do it. There was no other way out of the situation. It was all too overwhelming. So, rather than stay there and continue to spiral into depression, I left. Now that I’m away, I am re-thinking that decision.

But if I don’t take some time for myself, I’ll crack and be no good to anyone. I need to find new ways to help myself and in turn, help my parents. Looking for that help while coping with the situation and maintaining my own house and health has me in such a state that I can’t think anymore. I can barely function.

Day after day I go check on them. Every day it’s the same thing. Mom’s sitting in her chair in the corner, covered with an afghan, watching TV, whether or not it’s working and no matter what’s on. Dad, if he is home, is trying to fix the TV, meaning turn it up and running. He always blames it on the TV, which is not even a year old. The problem is either that he’s misplaced the remote or he is trying to use the wrong one. Once I find the remote, I show him, yet again, how to turn on both the cable box and the TV using the single remote. Every time, he tells me he didn’t know that. Some days, I just want to scream.

So, I left. Now I’m worried that they’ll fall or set their house on fire. But, I need space and time to think and to find the answers. Maybe something will come to me while I sit here in this hotel room as I contemplate what to do next. Or maybe not.

Published in: on October 28, 2010 at 10:00 AM  Comments (2)  

Finding Help for Mom and Dad

In my most recent post, I mentioned that I’d found some help for my folks. One of the people who commented on the entry suggested that I let everyone know how I did that. Here’s what I remember doing.

The first help that we had was visiting nurses who came to check on mom after her various hospitalizations in 2007-2009. Nearly all of those nurses were from Concordia Visiting Nurses (CVN), an organization related to the skilled nursing facility where mom stayed for rehab, Concordia Lutheran Ministries (CLM). For those of you who don’t know, if something is named “Concordia”, there is a good chance it is associated with the Lutheran Church-Missouri Synod. We are Missouri Synod Lutherans, and our home congregation has always supported CLM. It’s the first place I’d think to place a loved one in need of skilled nursing or assisted living. So, when we decided to get mom some help, that’s where we went.

Their social worker came to us and did an assessment. She suggested at the very least help with bathing and help with cleaning. I asked how my folks would pay for this, and she told me to talk with people in the county’s Area Agency on Aging. Since dad is a veteran, she also suggested the VA, specifically the Aid and Attendance Benefit program. If the VA hospital has a patient advocate, he or she may also help you find information. But don’t rely on the advocates to do the work as they are often overworked themselves.

I called the Westmoreland County (PA) Area Agency on Aging and set up another assessment. The county social worker came to the house, talked with dad about their finances, talked with mom, and verified a few things with me. She submitted the info she collected and came up with the cost. It’s a sliding scale, depending on income. Since they have an OK income, they pay about 60% of the cost and the county pays the remaining 40%.

Next, dad had an appointment at the VA with his primary care physician. I asked him about the Aid and Attendance Benefit program and said that if Concordia Visiting Nurses was one of the approved organizations, that’s who we wanted to supply the cleaning service. He asked his supervisor. (Most of the VA doctors that dad sees are still in training at the University of Pittsburgh Medical School and have to consult with a senior physician.) He did so and, within a week, CVN had called dad to set up a time for someone to come in and clean every week. The VA covers the entire cost of that service.

The county social worker also suggested that they get Meals on Wheels. Dad said no at first, but I eventually talked him into trying it for a week or so. That was in January. I don’t remember if the social worker set it up or if I had to call the local MoW myself, but it happened fairly fast after dad agreed. This is something they have to pay for every month. The cost, though, is minimal. I don’t know what it is in other areas, but this particular MoW charges $8/day for 3 meals, which they bring 3 days/week. The other 2 days are provided free of charge by the county. That means that for $104/month, mom and dad get 20 days-worth of food including cereal, fruit, sandwich, hot meal, milk, maybe a dessert. In the winter they also get two extra emergency meals to use if MoW can’t get to them because of snow or ice. The hot meals are packaged the way TV dinners are and can be reheated in the microwave or oven. It’s a very good deal and my folks like the food.

I don’t know what the agencies are called in different states, but a Google search on “aging agency”  or a visit to your state’s website would probably  lead you to the proper agency. As for Meals on Wheels, I suggest checking the phone book for the local organization. Remember that these are staffed by volunteers and the phone may not be manned a full 8 hours/day.

Hope this helps you help your family.

Published in: on October 10, 2010 at 7:13 PM  Leave a Comment  

Finally in Focus

I finally came up with a title and a focus for my blog thanks to the two classes I am currently taking. One is on blogging basics, the other on keeping a journal for holistic wellness. I believe I need the discipline of both classes to get me to begin writing and keep writing. The intent has always been there, but life seemed to get in the way and before I knew it, years had slipped by. At least Word Press didn’t kick me off the site or delete my previous entries.

Those entries are what helped me focus. I actually came up with the title last year on the occasion of my 60th birthday. Besides wondering if I were twice as untrustworthy (2 times 30) or completely trustworthy again, I also wondered what this, hard to admit, final stage of my life would be like. That got me to thinking of all I was dealing with:

Who will I be when I finally grow up?

How will I cope with my chronic health problems as I age?

How will I cope with my parents’ health problems and eventual deaths?

I read through my earlier posts and found that the primary topic was helping mom and dad cope with the tasks of every day life and the adjustment, at that time, of mom living in skilled nursing and moving to assisted living. She has since moved home, and then back into skilled nursing a few times in the last 2 years. In addition, she has been diagnosed with bladder cancer and has had periodic surgeries for that condition. Dad has had some skin cancer issues and continues to have balance problems. Both are suffering from varying levels of dementia, with mom being the most affected. They still live at home and will not even consider moving to assisted living.

In the past year, I’ve managed to arrange for some help in the home. Someone comes in and helps mom shower twice a week, thus avoiding my one nightmare scenario of finding them lying on top of each other in the shower stall, unable to get up after mom has fallen and dad has slipped trying to help her up. That service is partially paid for by the county’s Area Agency on Aging. The county social worker also helped me set them up for Meals on Wheels, something they insisted they didn’t want because someone once told them that the food was no good. It’s been 9 months now and they like it. The last service is the cleaning woman who comes in once a week. Her services are paid for in full by the Veteran’s Administration, as dad is a disabled WWII vet, Purple Heart and everything.

This means that I don’t have to go over there every day of the week and I don’t have to do a lot of cooking for them. I still do some special things for them, favorite dishes to supplement what MoW supplies. And we go out to lunch on Sunday. I should say, dad and I do, since mom rarely leaves the house anymore. It’s helped me to rest up a bit for when I do go over since there is always something to do.

Let me stop here so I have something to write in future posts. For now, I want to say that this blog will be about my attempt to answer the questions posted above. Along the way, I may share some tips or the URLs of websites or organizations I’ve found to be of help. Believe me, that might come in very handy if you are looking for something on the VA site since it is a bear to navigate. Not at all user-friendly.

I hope I get regular readers, but if I don’t, that’s OK, too. After all, this is first and foremost a blog for me, my health, and I.

Published in: on October 9, 2010 at 8:16 AM  Comments (8)