As I enter my third year of caregiving for my parents, I am more convinced than ever that those who are not (yet) caregivers cannot comprehend all that it encompasses, and DLH provides an invaluable forum. Because of being overworked and overwhelmed the first year or so, I wasn’t able to find the time or inspiration to contribute much here… but I DID read a lot of what others posted which helped with the learning process. Slowly, over time, the lessons and insights of others were absorbed and the caregiver do-to list eventually became something that I could deal with, although it is still one day at a time.

That being said, there have been innumerable lessons learned along the way; many of them surprisingly good ones.

My life changed completely and abruptly in the summer of 2009. I left my full-time job, packed up the car and our two rescued golden retrievers and moved over 600 miles to take care of my parents. We bought a tiny old house desperately in need of renovations about a mile from my parents. My husband stayed behind where he continued to work while our house was on the market. It took 10 months for the house to sell (at a loss in this economy, of course) and by then, my husband and I had learned to live without each other. Our first few months back under the same roof were rocky at best, readjusting to each other (with only one bathroom!) and we seriously discussed divorce. In addition to the near-daily crises with my parents (now 84 and 88), and the fact that my husband sacrificed a full-time teaching job to work part-time as an adjunct at two colleges (with no benefits or insurance, of course), the financial and emotional strains of caregiving very nearly did us in.

Caregiving does not allow me the luxury to look for a full-time job, or to accept one even if it were offered. My parents are (at this moment) doing remarkably well. Like most caregivers, I am chauffeur, sometimes cook, grocery-shopper, garbage-taker-outer, mail taker-in’er, floor mopper, accountant, bathroom cleaner, prescription filler, etc. I haven’t worn a suits or heels in 27 months, but I haven’t given them to charity yet, either. Which beings me to the silent struggle that is so difficult for most of us to address: The “What about me?” factor.

With my parents’ needs taken care of, I realized all I needed was 24 more hours in a day to take care of my own needs — and my husband’s — and our two 80-pound dogs. And our house and our future and….

Fast forward about 18 more months and here we are. Still together. Parents doing better than most at their ages. Our 1956 house is slowly coming along. We’ve decided we kind of like the retro-look of the ancient (but well-made) kitchen cabinets and even if we don’t get around to painting them for another year, well, so what?

We are doing everything we can to stay healthy — still no insurance, but we’re far more active now and take our vitamins and maybe I’ve inherited some of my parents’ genes. One of our two beloved dogs died last year but I was with her to the end (something I would never have been able to do with that full-time job) and had the vet come to the house when she told me she was ready to go.

In those hours here and there when the caregiving was caught up, I started playing with clay and rocks again, a lifelong obsession, but one I hadn’t had time for in years. That somehow turned into a business — I sell my jewelry at a monthly art show nearby, and at the local farmers market on Saturdays, weather and parents permitting. No big profits here, but it fills a need for me to have something of my own, to do something I love doing.

We’ve rescued three cats who came to our door in the past four months, successfully domesticating two ferals, and somehow they all manage to get along with my husband, me, and our dog in under 1,000 square feet. If you’d told me in early 2009 that this would be my life in 2011, I would have never believed it.

Caregiving teaches, every single day. If you persevere, you may learn what I did: that you are where you are meant to be; that life is what happens while you’re busy making other plans (thanks, John); that for every sacrifice you think you are making, you are receiving important, invaluable gifts; that you can do a great many things you never thought you could, or never even imagined; that you don’t really need as much materially as you thought you did.

On my first date with the man I was to marry many years later, we sat on the floor and listened to Dan Fogelberg’s “Netherlands” and “The Innocent Age” — vinyl on a turntable in those days. We recently did that again, and after 30 years, it’s still absolute magic.

Deb D.

 

18 Responses to Deb D – created new life to care for parents

  1. Jean F says:

    Deb, thank you so much for sharing your story, and so beautifully, too. I’m continually amazed at what eloquent writers some of our caregivers are. You and your husband have sacrificed so much…I hope he’ll find a silver lining or two, as you have with your art. And I’m so glad to hear you’re taking care of yourselves. Resiliency and a willingness to accept change is so important in life; without those traits it would be impossible to survive the unpredictable days that greet a caregiver each morning. You are so adaptable, you’ve turned your whole situation into a new business – bravo! You could easily have focused on the past and resented every aspect of your new life, which ultimately would have damaged your physical and mental health. Rather than swim against the tide, you chose to go with it; to see where it will take you. Very sensible; evolved, and much less tiring. Your parents are so lucky, they must be proud that you turned out to be such a good and caring daughter.

  2. Karen says:

    Deb, I think that it’s wonderful that you and your husband have made the choice to live with your parents while they’re still not that bad off. You mentioned they are doing better than most at their ages. This way you can still enjoy and appreciate each other more. I wanted my parents to come to my state so I could do the same, but my mom was against it at the time. My dad had all ready passed and she couldn’t even communicate verbally anymore by the time I had to move her here, so I have always had those regrets of not being able to enjoy them in their final years. I’m so happy you and your husband are making it all work out. Char’s recent quote about how caregiving is succeeding really resonates here with me. I’m sorry to hear you lost one of your beloved furry children. Just remember “Rainbow Bridge” on the sad days. Overall, it sounds like you have filled your new home with lots of family and your lives with lots of love. You did good, hats off to both you and your husband, Karen

  3. Marietta Herod says:

    Deb D – thank you for sharing your story so eloquently. It’s been just a little over 6 months now since my Mom passed and every now and again I feel a bit “lost” without her – and long to talk to her and sit with her and just be with her. I know that grief is a process and I’m going through it, but overall I feel well and know that Mom is up in heaven and no longer needing oxygen or having pain. Like you said, “you are where you are meant to be.” I’ve also taken up an old hobby – playing guitar – and it is such good therapy (with the exception of building up those callouses). Almost two weeks ago I finally got to meet Char and Lynn face to face at a gathering in Peoria and they are just as beautiful in person as they are online . . . My only regret/disappointment was that I didn’t get to meet Miss Jean and give her that personal hug and thank you for providing this site and this forum that provides help and hope to so many of us in various stages of caregiving. Everytime someone played “Don’t Lose Heart” over the weekend I was filled with smiles/tears/gratitude that I have become a part of this community and continue to draw strength from all who share there stories. Now – back to the task of raising my wonderful kids who are teenagers and trying to figure out their own paths and knowing my Mom is smiling down on us knowing she gave me the tools I need to get the job done. (And also knowing she’s chuckling out loud when the kids challenge me and push their limits knowing her wish has come true that I’d get a double dose of what I gave to her at the same age.) Lord, grant me the serenity . . . Hugs to all.
    Marietta

    • Joan says:

      Marietta – I so enjoyed meeting you at the park a few weeks ago. I would have loved to talk more. You are in my prayers daily as you continue to find your way into a life without your wonderful Mom physically with you. I too cried several times over the weekend, with a such a grateful heart that Jean, being true to her spirit, brought us all together to help us care for each other as we care for those that need us. It so helps to know we are not alone, does it not? We were probably in much of the same emotional state much of the time. This was to be a healing weekend for me, to fully grieve Dan (finally), my Dad, Andrew, Ronald & Mickey. It has been an extremely rough year. Meeting you, Char & Lynn were important highlights of my time there. When I saw you Thursday, I couldn’t help thinking – what a little sweetheart. And you are! :-) Joan

      • char says:

        Joan,
        My heart went out to you before we even met, but it was great to really meet. Jean provides for all of us @ DLH, a warm, comforting, friendly, and inspirational meeting place. Isn’t it great to know we are not alone; others have gone through some of the same steps in the journey of caring for loved ones. Without this site, my life would have a great void, I am grateful everyday for what DLH provides for all of us.

        ~Char

    • Jean F says:

      Next year, Marietta. Hugs are on the house. It’s so strange, isn’t it? The grief process? Some days I still can’t believe Dan is gone; other days, our whole time together seems like a beautiful dream.

    • char says:

      And Lil Mari, it was a pleasure to finally meet you, but when I first saw you, I thought ” this must be Marietta’s daughter!” So sorry, I did not get a chance to hear you play, and look forward to a time in the near future, when I will have the honor.
      Your mom IS looking down and smiling on you and the kids. :)
      ~Char

  4. Tricia says:

    Absolutely inspiring. I am not a caregiver or patient – yet, (we all will be someday). Your wisdom hits home.

  5. Linda Brendle says:

    Hi Deb,
    Thanks for sharing your story. As a veteran caregiver who has come through to the other side relatively sane and healthy, I applaud your strength and tenacity. Keep on taking care of yourself as you take care of your loved ones. As we always said in our caregiver support group, put your own oxygen mask on first.
    Blessings,
    Linda B.

  6. Lynn says:

    Deb, I only hope I will have HALF the strength, sanity, and flexibility you have when my time comes!

    On a financial/health note, my state’s population of uninsured is around 48% (& we are a state full of very heavy people and many smoke:( I have found there are many prescription insurance companies that have medication assistance programs (MAPS) and they seem be raising the qualifying income allowance. Sometimes they are very difficult to find, several companies offer the same medication through different programs at a different financial threshold, and if you are on any chronic, maintenance, or preventive meds it possible to substitute in the same category with a pharmaceutical company which does offer it under a MAP.

    If this sounds absolutely confusing, it is because IT IS!!! Even though I have a Master’s degree in Social Work, I still become confused when I have to navigate the MAPs. They change every year, and many times every six months. Unfortunately, many physicians’ offices do not have the extra nursing/administrative staff to help; it is a tremendous amount of paperwork and tracking. If patients are able to find and complete the applications themselves, have everything ready for the physician to sign, most physician’s will do so. So, just a thought. Hope you continue to join us now that things have settled down somewhat; you have a wealth of experience and information for us all!

    • Deb D. says:

      Hi Lynn,
      Thanks for the advice; I am fortunate in that I am not on any prescription meds and my husband on only one. However, navigating Medicare and the VA for my Dad has been an absolute nightmare. I do have an elderly neighbor, however, that might be able to get help through MAPS. I will gladly share your information with her, thank you!
      Deb D.

  7. Joan says:

    Deb – How wonderfully you described your life, the life of a caregiver. And true, non-caregivers probably do not fully understand the degree of self-sacrifice a caregiver gives every minute of every day. Our stories are very much the same, as I expect most caregivers would also claim. Your story brought the tears as I read it, especially about your losing your dog & taking in the kitties on top of everything else – too close to home. Fortunately, I am currently enjoying a respite from caregiving, but still trying to cope with the after effects of the stress. I am still exhausted, with other problems as well, but would not trade any of the experiences for anything. The gifts I received are more valuable than any of the sacrifices I did and am still making. I expect the caregiving to start again soon as both my husband’s mother & mine are on a downhill slide. You are a very wise woman Deb, with a beautiful heart. Thank you for sharing your story. Joan

    • Deb D. says:

      Hi Joan, and thanks for the kind words. Because the life of a caregiver is usually about everyone but the caregiver, I simply wanted to address that aspect… that of feeling as if you have lost yourself entirely. I am delighted that I have been able to help my folks and I know that my efforts have made a difference — and I think a lot of us get so tired and so overwhelmed, that it’s often hard to see the rainbows some days. There’s a kind of acceptance that takes over, don’t you think? With you mother and mother-in-law in decline, you know what lies ahead… perhaps not the specifics, but the story in general. I wish you all the best in dealing with your coming issues, and may I repeat, don’t forget to care for yourself!
      Deb D.

  8. char says:

    Dear Deb,
    I read your story, shaking my head yes, and then drying the tears. You have come so far since 2009, I too have been there at one time, years ago, saying to myself, there is no way I can do this all. Well we do, don’t we, is it easy, um… I think not, but as you said, lessons are learned everyday in every way. It is a difficult position to take on, both your husband and you have sacrificed so much, and really no one asks you to, you just do. I admire the way you have jumped over the many obstacles you have encountered along the way. I think it is absolutely wonderful that you have taken your hobby and turned it into a business, which is something I have always dreamed of doing.

    Please come back and post as often as possible, and find the”me” time for your passion when you can.
    ~Char

    • Deb D. says:

      Hey Char… It’s interesting that the more we do, the more we can do, isn’t it? The change from being on a more or less predictable schedule in your life to the total reverse of never knowing from minute to minute what will be required of you next might be the most difficult part of the “shift” to caregiver for many of us. You can’t really plan things (outside of the basics) or know from one day to the next where you’ll be or what will need doing. Even planning to meet a friend for coffee becomes an unbelievably complicated matter. I had no “plans” to turn my hobby into a business… I just wanted to play with clay again as a kind of therapy, because it’s something I could do in those stolen moments without “cheating” anyone. It just kind of evolved (and is still evolving). I encourage you to try to “escape” to your hobby whenever possible for the renewal it provides your soul and in turn, provides energy for the caregiver in you, too.

      Of course, DLH provides a bit of a respite for so many of us, whenever we can get here. I am grateful to Jean and all of you who help with and contribute your wisdom to this site.
      Deb D.

      • Melisa says:

        Hi Deb, I want to write more to you on DLH about your story when I have more time, but, for now I want to reply quickly to say that yesterday I left my cell phone in the apartment, went down to the swimming pool where my Dad lives and swam (well, dog paddled) for about 20 minutes and then joined in the senior water aerobics class for 20 minutes. It felt so indescribably great! I haven’t been without my phone or in a swimming pool in 2.5 years. I was smiling and thanked the instructor and said I not only wanted to come back, I need to come back AND, I will go back. Only the caregivers will understand how wonderful those 40 minutes were……..

        • Char says:

          Hey Melisa,
          40 minutes without a cell phone, it must be like heaven on earth…OK, at least a time when we didn’t know the meaning of the word ….” caregiver”
          Go Back Young Woman, Go Back… Swim and Smile Away :)

          ~Char

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