THE WHEELS ON MY CAR GO ROUND AND ROUND

Self-Care/Medical 2017/Caregiving

YOU ARE NOT ALONE

I know I’m not alone in this business of caregiving but it can be a lonely life. I fight to stay out of that hole of despair. It’s not good to look back on ‘what might have been.’ Those days aren’t going to happen and I must close the door. I need new and realistic dreams. My dreams must have the possibility of coming true.

Seventeen percent of all caregivers in the U.S. are caregivers of Veterans. Seventy percent are women caring for their spouse or partner while one in four cares for their Veteran son or daughter.

It wasn’t until tax time this year that I added the miles we drove for Tom’s medical appointments. I found it hard to believe we’d driven 30,000+ miles within a 60-mile radius when I added the 2016 numbers. I can’t seem to shake the idea that 30,000 miles would make a magnificent vacation.

The issue with Tom’s many appointments is that it tears up my entire day and I accomplish nothing else. Unfortunately, there are the daily living requirements that go

NO TIME FOR A SIMPLE CUP OF COFFEE.

undone. Sometimes pumping gas for the car seems like one task too many. Preparing another dinner, doing the laundry, paying the bills and other household maintenance requirements overwhelm me.

Tom now has 37 chronic conditions monitored by 15 specialists and while I’m happy with his medical team, it still means we touch base with each of them every month. Physical therapy adds on 3 days a week.

Along with Tom’s many medical appointments, he was hospitalized for 182 days in 2016.

Caregiving doesn’t stop and with each new decline, I find myself taking on new and unexpected roles.

I used to be the princess that never had to grocery shop or cook or pump gas or so many other mundane tasks and now, they all fall under my domain. The princess went to a job she loved every day without a single thought of what all went into the maintenance of a well-run home.

There are many aspects of caregiving that require extra time. I miss blogging. I miss talking with my blogging and other friends. Being a caregiver can be isolating and it often seems my whole life has been taken over 100%.

One of my main sources of enjoyment has always been reading and that pastime has virtually been absent the last year. My ability to concentrate is gone and I want it back.

This world of caregiving I’ve entered with Tom’s physical ailments is totally different from the caregiving responsibilities I had as a mental health caregiver. They each present different challenges.

In the upcoming months I’ll be talking more about caregiving and hopefully pass on some tips you’ll find helpful. In the meantime I’ve taken positive action that qualifies us for more assistance through the VA.

Every available space covered with medical records.

In January 2015 I began the process of going through 50 years of Tom’s medical records. This included all of his active duty records and all medical records for the 30 years since he’s been out of the military. I spent 12 hour shifts going through the records, combing out anything that could possibly be active duty military related. It also included the worsening or degeneration of any condition Tom had when he discharged from the military.

After a year of consolidating the records into appropriate categories, I contacted doctors for specific statements as they related to Tom’s treatment and current condition. With letters and supporting medical records compiled, we submitted the disability claim.

After a number of months my hard work paid off and Tom’s increase in disability rating provided us a few more benefits in the home. These numbers determine our eligibility for:

  • Respite care in the home for 6 hr increments up to 40 times per year.
  • A respite aide visits the home twice a week for 2 hrs to help Tom in any way he needs assistance.

I’ve finally agreed that I can’t do it all and have set in motion 3 game changers for myself:

  • I’ve hired a professional to mow the lawn.
  • I’ve hired professional housekeepers to deep clean once every three weeks.
  • I’ve hired a team of professionals to help me redevelop my many gardens into the same number of gardens but all requiring minimum care. My desire is to stay on my feet and
    Provided by Healthy Place.com

    I ONLY THOUGHT I HAD TO DO IT ALL.

    not fall this year as well as be available when Tom needs me. I also plan to find reading and gym time among the many hours I used to spend among my flowers. I anticipate it will be a tough transition.

I can breathe now that I’ve recognized I can’t do everything myself and frankly, others are well trained to do tasks I always required of myself. We have fabulous friends willing to chip in and help but they have their own lives to care for. We’re all reaching that age when we can’t do what we were once able to accomplish.

For blogging, I know I’ve said it before and I’ll say it again. I want to blog again on a regular schedule. But to me that also means I not only visit your blogs and read plus comment but also reply to whatever you may comment on my blog.

Do you struggle with staying caught up? Do you have a magic answer?

I love you all and so appreciate your ‘likes’ and ‘comments.’ I hope to see you around and thank you for reading with me.

Advertisements

About Sheri de Grom

Retired Fed/JAG, 5 yrs. on Capitol Hill. Former book buyer for B and N. Concerned citizen of military drawdown. Currently involved in mental healthcare reform, health care strategist and actively pursuing legislative change wherein dual retirees are exempt from enrolling in Medicare at their own discretion without losing tertiary healthcare benefits. Monitor and comment on Federal Register proposed legislation involving Mental Health, Veterans Affairs, Health and Human Services, Medicare and rural libraries. Licensed OSHA Inspector to include Super Fund sites. Full time caregive to Vietnam era veteran. Conceptualized, investigated possible alternatives, authored, lobbied for, and successfully implemented Title X, Section 1095 (known as the Third Party Collection Program of Federal Insurance).
Aside | This entry was posted in Caregiving, Medical 2017 and tagged , , , , , , . Bookmark the permalink.

38 Responses to THE WHEELS ON MY CAR GO ROUND AND ROUND

  1. I do struggle to keep up. And I do not have a fraction of a fraction of the responsibility you have. I have gone from writing missives to jotting down thoughts and doodling pictures that capture some rhing for me. I enjoy having thoughts and ideas pass thru my brain and out thru my finger tips. How much I write isn’t as important as doing so. Book reading has been replaced by reading whatever creative idea someone shares in a post or picture or piece of art. Magic? It exists. But you can’t count on it. 😉 Inspiration helps, and comes from love like yours.

  2. Sometimes the wheels on my car DO NOT go round and round………..LOL

    • Some days it feels as if my wheels are made of something square and not round but for the most part, I’m thankful I don’t have to fight the extra fight just to get from point A to point B.

  3. Wow, Sheri, I knew you had a gargantuan task, but putting it all together as you did in your post puts it in perspective. So glad to hear about the progress!
    best,
    Jack

    • Jack, Hello and thank for dropping by. At the moment all is still but I never know how long that might last. Finding these moments in time when no one is expecting me to be doing something else are rare gems in my day. I had no idea how much stress I could take off myself by relinquishing some of the daily responsibilities.

  4. It’s always good to hear from you Sheri. I can’t imagine how difficult it must be to get through each day and the thought of what you do every day takes my breath away. But I know some of those feelings of isolation and not having time for a life. When my mother was terminally ill I couldn’t concentrate on reading, I couldn’t write, there was barely energy for anything but just taking one day at a time for four years. And I found it very hard to ask for help. I’m glad you’ve realised that you do need that help and I hope the respite care gives you a little time to top up your own reserves. It can be difficult to keep up with blogging without the responsibilities you have, but I, along with many others, will be here when you want to visit 🙂

    • Thanks, Andrea. I hope all is going well in your world. I do appreciate your stopping by.
      I decided out budget would have to take the hit and I would hire the extra help for me. What the VA offers isn’t much but what little there is, I take them up on the offer.
      You are so right about just barely having the energy to take one day at a time. I don’t make deals for day 2 or 3 because I just never know from one day to the next what my schedule is going to look like.

  5. Sheri, wow, talk about FABULOUS news — I’m chiming in along with everyone else who’s thrilled to see you’ve enlisted some (amazingly capable) help! Good for you on summoning up the strength to do that…and I loved The Language of Flowers, have The Light Between Oceans on my TBR shelf, and now want to find the other two you mentioned. All in all, a very happy series of events…I’m so glad!

    • Hi, Laurie, Thanks for stopping by. If you haven’t read Beach Colors by Shelly Noble, I just finished it. Am now starting a novel by T. Greenwood – one of my favorite authors – always lots of complicated family drama.

  6. Hi Sheri! I’m so glad to hear that now y’all have more benefits!!
    And that you admitted you can’t do it all yourself. Hi 5, that was important for your own health!
    Just blog as you can. It’s tough, but don’t feel guilt when you can’t. No one can have it all, at the same time!
    Melinda

    • Hey, Melinda. Thanks for dropping by. It’s so hard to get away from the do it all mentality but think I’ve crossed part of that barrier. I can honestly say I really miss everyone when I don’t have the connection of blogging.

  7. That is amazing. Once your concentration returns (and hopefully the changes you’ve invoked will make that happen), I think you’ll get lots of reading done at doctor appointments! My hustand’s healthy and I have a gardner and a housekeeper. I got wise advice from a mentor years ago that told me to share the wealth, let people good at a job do the job while I did what I was good at. You’re simply doing that.

    • Hi, Jacqui. I still have to help Tom get around at doctor’s appointments and must be at every appointment as Tom forgets what’s discussed but there’s still hope on the reading front. These last 2 weeks I read ‘The Language of Flowers’, ‘Lilac Flowers’, ‘The Light Between Oceans’, and ‘The Zookeepers Wife.’ I think I’m off to a pretty good start.
      My days are still filled with caring for Tom but reading is finding its way back into my life and I’m really beginning to love it.
      Your mentor was right with her advice. I’ve beginning to relax just a little. Sheri

  8. Totally agree with Patti’s comment, Sheri. You’ve been going above and beyond for so many years. Glad to see you delegating more and more of the ‘heavy lifting’ duties. It is time to self-care. I will forward something that has really helped me in recent months. And I will give you a call over the weekend. Love and hugs, Mary

    • Hello, dear friend. It’s been great to have others do some of the chores that were driving me crazy because I simply couldn’t get to everything and accomplish them in exactly the way I wanted. I’ve landed a good team and found I can be pretty darn flexible without anyone taking advantage of me. I pray you and Jacques are well. I look forward to talking with you. Love, Sheri

  9. It’s good to see you pop up over the cyber horizon. I also am glad you’re getting help. Just a clean house and gardening kept up can chance my mood. Sending you tons of love and cyber hugs. Wish we lived closer, I’d come bring you a snack and hug in person. Love to you both. ❤

    • Wouldn’t it be nice to just relax and have a snack and a cup of coffee or tea? Off course those hugs are welcome also. I totally agree, having the house clean and kept up and knowing I don’t have to do it has lifted my spirits considerably. My garden crew is a blessing in disguise. I never knew how much I was making myself responsible for until I allowed myself to hire a few things out. I’ll not say I feel like a new woman yet but I can say I have had a few nights where I’ve had 8 hours of sleep and that’s pure heaven.

  10. GP Cox says:

    You know that I am aware of the responsibilities you bear, that is exactly why I haven’t bugged you too much lately. Those recipes you sent me turned out great by the way. They finally pushed me to buy a new crock pot and I broke down and bought a toaster/confection oven so I don’t have to turn on and clean the big oven one all the time.
    You made my day by saying you have finally hired people to do some of the chores you’ve been trying to do. You have to have some time for yourself or you’ll drop eventually.
    Take care of yourself too and as always – my very best to Tom!!

  11. ksbeth says:

    sheri – i am so happy to read that you have at last secured some support, for yourself and your own well being. do not worry about us out here, we are still here and are not going anywhere. you have certainly taken some positive steps towards self care and that is huge.

    • Hi, Beth. It’s so nice to see your face and your words. You have a busy life and still, manage to hit all the blogs, it never ceases to amaze me. I’ve decided you must have super powers.

  12. Gallivanta says:

    So pleased you have been able to access more assistance. You will benefit as much as Tom, and Tom must be relieved that you are getting more help. I am rarely caught up. 😦 The weeds in my garden must think they have landed in heaven.

    • Being caught up is a foreign concept to me. I’ll admit the extra help is a tremendous help. I had to admit the young woman weeding for me does the kind of job I used to do and I am ever so particular. Tom was shocked when I told him. It’s such a relief to have some of the chores taken care of on a regular basis.
      How are you? I’ve missed everyone and must get over to your blog. It seems I’ve been gone forever. With love, Sheri

      • Gallivanta says:

        I am okay. Just chasing my tail a lot. Finally got some repairs and renovations under way at the end of March. I thought everything would be done by now but NO…..

  13. rabbiadar says:

    Sheri, this is great! I realize that you still feel overwhelmed but I think the changes you’ve made will make a huge difference for you.

    You and Tom remain in my prayers, nonstop.

  14. I am so glad that you are now able to take care of yourself. I have a friend – a veterans wife – who is currently struggling with her husband’s worsening PTSD as he becomes more overwhelmed by life…

    • Hi, Maureen. Your friend might benefit from the VA Caregiver’s Program. Every hospital has one. They meet monthly and have great programs. I don’t get to go often but when I did, I always gained a lot of useful information. Thanks for stopping by and I hope you are doing well. Sheri

  15. Hi Sheri! When I saw your name pop up in my e-mails, I went, “Yay! It’s Sheri!” Good to hear from you. And I’m so happy to read that you’re delegating some of the many tasks that you “can” do but really don’t have the time for any longer. Your number one priority has always been Tom. We all know that. But you do have to cut yourself a break and allow yourself some down time. There’s nothing wrong with that and it shouldn’t cause you any guilt either. You can only do so much because there are only so many hours in a day. And it seems that your days are certainly very filled with caregiving. Wow. Enjoy yourself sometimes. It will be you wonders.
    Much love,
    Patti

    • Patti – Wonderful to see you. It took me a long time to see the ‘light’ but it’s been great to have some help. I hope you and your family are doing well. Love, Sheri

What's On Your Mind, I'd love To Know

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s