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I'm not meant to be a caregiver!

Monday, May 06, 2019

When I was a girl I thought I wanted to grow up to be a Nurse - didn't everyone? I had some minor health issues and always loved the nurses who cared for me. When I went to collage I decided I should be a Social Worker - until I almost failed my sociology class. So that was a no go as well. I realized that taking care of others wasn't my best quality.

Sure, I had five children and I certainly took good care of each of them, even the challenging one. But I loved them unconditionally! Even after I went to work so their father could be a stay-at-home-dad and create works of art on his pottery wheel, I found it to be my job to come home from work and take care of the children. I was the one who went to all the concerts, baseball games, gymnastic meets, swim meets, and parent-teacher conference. My mom-taxi started about 5:45 p.m. (which gave me all of 20 minutes from the time I stepped off the bus to the time I get in the driver's seat) and didn't usually end until about 9:00 p.m. I welcomed the day when my oldest daughter got her driver's license because it meant one less person to drive around and potentially another driver in the household. Yes, their father was still here but he was too busy creating art to take care of his children.

But things right now are completely different. My children are totally independent - in fact, one of my sons is coming on Friday to help us! It's my dear sweet, kind hearted, second husband who is in need of caretaking. This all started on his birthday in early April and he has been hit with one health problem after another since then. We have visited a doctor 11 times in the last 33 days - that's 33% of the time. And not one single doctor can seem to be able to help him. They prescribe this medicine, or that. They say do this, or do that. Nothing is helping and, in fact, he is getting worse every day. The current issue - he has been having a harder time swallowing until he has almost stopped eating altogether.

And he needs my constant care. Not only am I driving him to every single one of these doctor appointments or urgent care - but I am having to help him get dressed, trying to find things he can eat, and making sure he's drinking enough. The last two days I had to help him get up out of bed. Yesterday I had to get the walker up for him (thank goodness my mother had the good sense to get a walker and I had the good sense to take it home after she died - at the time I thought it was a really dumb idea but it has been a life saver more than once). After he gets up and gets something to eat he is better.

But then there's that whole eating thing. Today I went to Target to look through the baby food isle. OMG, baby food has really changed since the last time I had to buy it in 1982! I found a Chicken & Veggie meal and a Turkey & Sweet Potato - and he was able to get down about 2/3's of the Turkey meal. I'm going to make him a 4 oz protein shake shortly to see if he can sip on that while we're watching some TV tonight.

I love this man, yet I find myself so frustrated because this caregiving is pretty much a 100% deal. You, the caregiver, are "on hold", waiting for that call. "Kath" he says, and I run. But then I am also so scared too. This morning he slept way past his usual wake up time. I peeked in on him once - like I used to do with my sleeping babies. Listening for their breathing to make sure they were still okay. But when he wasn't up by 9:15 I had to look in on him again - this time he was awake. Thank goodness.

So, I have so much respect for all you wonderful spark friends who have been caretakers in your lifetime. I never had to take care of either of my parents - they both died after a massive stroke. One day they were with me, the next day they were gone. Oh, an a funny little thing. After two weeks of taking care of my dear husband I received an email from Blue Cross / Blue Shield (our insurance company) with information about how to care for the caretaker! Seemed like a message from God!

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Member Comments About This Blog Post
    Caregiving takes a toll. I cared for both my parents. I couldn't do everything I wanted to do, and had to make them my top priority. That was hard sometimes. Are you able to get home care to help you? They are only in and out, not staying for any length of time, but it's good to have someone who can give advice and get things set up. The bath aid was a godsend. My Dad had trouble swallowing. We bought a thickener to add to his drinks, even water and coffee. It sounds like your husband may not need that.
    411 days ago
    Oh, golly...this is a terrible situation. I know how much you love Tom and how trying this is to your psyche. Believe me, I know what you are going through. I feel SO guilty when I have to leave Don to go into work. Find a social worker at your local agency for senior care. My friend Michele lead me to a wonderful social worker that has helped me in COUNTLESS ways to find help that is available for seniors suffering serious health issues. She even managed to get us some gas cards to help out on the gas charges going up to Moffitt. Don't be shy about asking for help...you and Tom have paid in your taxes for years and years and these services are there to support and help you now. They do have caregivers that can come into the home if you qualify so that at least you can get out to lunch with Lauriellen or a good friend or the gym...or whatever you need to do for your own mental health.

    I will be happy to share with you anything I have learned that might help you also. We are here to support each other...we may be far away geographically but we are side by side mentally and emotionally.

    I don't know WHAT I'd do without the support and love from my sparklers! emoticon
    412 days ago
    I'm so sorry to hear your dh is having health problems. I know how hard it is for you I went through many situations with my dh. I will keep you in my prayers emoticon as well.
    415 days ago
  • PCOH051610
    Hugs to you, Kathy.
    420 days ago
    Don't give up until you get some help for him and
    yourself.It IS out there for you BOTH! emoticon
    421 days ago
    If it helps at all, I am secondary caregiver for my 96 1/2 yo Mom. She lives with my sister who walks in your shoes. We are accepting that more help will be needed. Mom was recently hospitalized with pneumonia and also had swallowing tests due to issue of aspiration. She has what is called a Zenker pouch. Hope the doctors can pinpoint your husband's issues soon and provide support and relief.

    My thoughts and prayers are with you.
    421 days ago
  • DESIREE672
    I do hope they find the cause soon. I feel for you as a caregiver. I always saw myself as not a nurturing type, but here I am one too.
    421 days ago
    emoticon emoticon Prayers for you and husband for a treatable diagnosis and strength for you both to get through this very difficult time. If he hasn't seen an ENT, USMAWIFE's suggestion is a good one.
    421 days ago
    My heart goes out to you. That is a really tough situation. That BCBS pamphlet was timely and so important. You really have to look at self-care as like a medication prescribed for your health. It's not a luxury, it's a necessity and it's much easier said than done.

    Thinking of you both and wishing you strength and rest!
    421 days ago
  • HOLLYM48
    Sending prayers for both of you. It is a hard position to be in. I hope you will find time for yourself as you need time to recharge your battery. I hope am answer and solution will be found soon. Hugs
    421 days ago
    Oh Kathy, I know what you are going thru, just 2 years ago I had to take over everything for Larry, and I am thankful everyday that he he totally recovered, and is in great health except the being in that coma cause him to lose a lot of his muscle tone, and now has Drop Foot. But at least I knew what we were battling. Have the thought about ALS, I know that is a dreadful diagnosis but there is help if it is diagnosed. Please keep at them he find some help, and figure out what is wrong.
    422 days ago
    For instance...do you need someone to pick up prescriptions? To mow the lawn? Often these things weigh on us; but we can't do them. But someone wanting to help could, which would lighten your burden, and allow them to show you both love. I'll pray
    422 days ago
    How terribly sad. It's amazing that with all the modern technology, the doctors are unable to determine the problem. Can you get help from Home Health to help with his care? Children who can come help and give you a bit of respite? Prayers that God will provide the answers you need.

    emoticon emoticon emoticon emoticon emoticon emoticon emoticon
    422 days ago
    I'm glad your son is coming to help; sometimes just to not be alone in the caretaking is a help. One thing I learned is to ask for specific help...often people want to help, but don't know how or are not up for hands-on with the one who is ill.
    422 days ago
    Exhausting, scary, frustrating, along with feeling helpless -- I am so sorry your life is so overwhelming with the caregiving. And so frustrating that the medical community hasn't been able to come up with a diagnosis and a treatment plan! And in reading other Sparkblogs, it seems that you are not alone -- a family member comes down with a bad cold, or pneumonia, which is the catalyst for a more serious health challenge.

    Like you, I do not consider myself caregiver material, although at times I have thought about the "what ifs," and I know that, like you, I would do what needs to be done. Fortunately, you are aware that your own health and emotional balance are priorities, so please take care of yourself. Bless your son for coming and offering some relief.
    422 days ago
  • no profile photo CD14322774
    I hope you get some sorely needed answers soon and get your hubby on the road to recovery!!!
    422 days ago
    Did that w/both my parents. 3 yrs. long distance and 2 yrs. where they lived w/me. Longggg. But somehow you summon what it takes to do it. You have my prayers. It is NOT easy @ all.

    Prayers for both you and your DH.
    422 days ago
    I understand how frustrated you must be. Sometimes you have to ask for help from friends or family. I was in a situation where my DH had a stroke. He is an only child. His father had cancer and was in the hospital, his mother was in a facility for Alshiemers and needed constant supervision. My dear mother would go check on his Mom while I went to sit with his Dad. In our county we can now ask for help from Hospice in situations like this. Even if the help is to give you relief for a few hours it is well worth calling. Praying for you to get answers as well as help for free time. emoticon
    422 days ago
    When I was little I we would go to this place called the North Pole near Colorado Springs. It has rides and toy shops, and of course Santa. Every year we would go and I would get the nurse kit at the toy store. I've always been the one to care for everyone. I've dropped everything to help others.

    Oh, Kathy I know what you mean about looking in on them when their sleeping. I stand at my Mom's bedroom door listening and watching her to see if she is okay. My heart breaks for you because I know that feeling too. Being the caregiver is hard work and stressful. We went grocery shopping today and I kept thinking how easy it would be if I did it by myself.

    I hope things start improving for your hubby. emoticon
    422 days ago
    You are spending your days caring for the one you love. Though it may be hard it is truly a wonderful thing!
    422 days ago
    Wow, Kathy, this sounds pretty serious. I wonder what's wrong. Difficulty swallowing would be so scary and miserable. With all our modern healthcare, and the doctors can't figure out what's wrong after 11 visits? That's sort of disappointing. I certainly hope you get some answers soon and can get some idea of how long it will take to recover. Not knowing how long this suffering will last--and indeed you're suffering, too--must be one of the hardest things. The worst kind of tunnel is a long one that you're in for the first time, and you don't know how long it is, and it seems to be taking forever to catch even a glimmer of the light at what you assume is the other end. You start to wonder does this tunnel have an end? I hope the light comes into view very soon, my dear.

    Keep us posted, and please try to find some time to relieve your own stress. Go out in the back yard and holler! Ha ha. Just kidding.
    422 days ago
    422 days ago
    Wow, sorry to hear about your husband's health issues. I do hope one of them identifies and treats the problem.
    And, I hope you are taking care of the caregiver. Yesterday was Nurses' Day--both my nieces are nurses; when is Caregivers' Day? (lol, I know, everyday!)
    422 days ago
  • LYNCHD05
    Been there for the last two years. Thankfully things are a little better take it.
    I sincerely hope your hubby improves very soon.
    422 days ago
  • no profile photo CD12282919
    Prayers for both of you.
    422 days ago
    emoticon God bless you. I have been were you are as a caregiver and its HARD

    I had trouble swallowing I was sent to an ENT who specializes in issues with swallowing. It might be a way to find out I had to have tests were they checked how I chewed and swallowed as well as being scoped to see if there was any blockage. They also did a
    scan of my throat, neck and brain to rule anything like blockages out
    422 days ago
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