Caring for a Spouse with Vascular Dementia

MCC5

 

 

Meet: Barbara
Caregiver Connection: I met Barbara through the #write31days challenge and her series on “Dealing with Dementia’s Demands”
Blog: http://scrapper123.blogspot.com
Who she cares for: Her husband, who suffers from vascular dementia.
Favorite Bible verse: Psalm 116:1-9

Wearing hats is not who I am. They just aren’t comfortable; and most of the time my head sweats from them, especially the wool winter caps! I do “wear hats” or labels that define who I am to those in my life. For instance, to my parents I was Daughter; to my grandparents I was Granddaughter; to my brothers I am Sister; to my children I am Mother (or other variations); to my grandchildren I am MeMaw; and to my friends I am Barbara, or Barb, or B. J. And to my husband, not only am I Wife, but I am also Caregiver. And recently, after successfully completing the Write 31 Days challenge, I have come to realize—I am a Writer—at least an amateur wanna-be writer!

As I look back on my caregiving journey, it seems as if I have been “caring for” someone ever since my first marriage—as a military wife, a stay-at-home mom, then a working mom; wife and working mom in my second marriage; and the wife of one who subsequently was diagnosed with dementia…all of these are instances of caregiving, right?

Yes, the above roles—wife and mother—certainly called for a caregiver of a different kind; one who takes care of the household when the father is away and one who takes care of the children in the way a mother would.

But, I doubted whether or not I was a ‘real’ caregiver. To better understand what a caregiver is, I turned to The American Heritage® Stedman’s Medical Dictionary—which defines “caregiver” as:
1. “An individual, such as a physician, nurse, or social worker who assists in the identification, prevention or treatment of an illness or disability.”
2. “An individual, such as a parent, foster parent, or head of a household who attends to the needs of a child or dependent adult.”

Obviously, since I am not a physician, nurse or social worker, the first definition does not fit our circumstances. The second definition appears to describe our roles; but indicates a dependent adult. That is where I have a hard time thinking of myself as a caregiver.

All I can do is have faith that God will walk with us on our journey. #dementia #caregiver http://wp.me/p2UZoK-yq via @blestbutstrestThere are still things that my husband is capable of handling on his own: personal hygiene, such as dressing and bathing himself; eating/or feeding himself, warming up leftovers in the microwave, driving and getting where he needs to go by himself; but he lacks the ability to cook a decent meal, plan a budget and buy nutritious foods and items that we need; handle the checkbook and finances; make doctor’s appointments; order prescription refills and set up daily doses; and so on.

Since my husband is capable of doing so much, does that still make me a caregiver? I have asked myself that question many times; the only answer that would be correct is—yes. Yet, I still find it hard to realize—that I truly am a caregiver. My husband, who has vascular dementia, would not be in agreement to his being “cared for”.  However, it is obvious when I observe what he can and cannot do for himself.

In many ways it is just like caring for a child—on Day 24 of  my 31 Days of Dementia’s Demands series “How Caring for Others Affects You” I referred to my husband as a “75-year old toddler.” When I step away and observe his behavior, I notice that he acts exactly like our 3 ½ year old grandson!

According to my observations and the above definitions, my journey as a caregiver began once we received the diagnosis. It has been more than 10 years since he was diagnosed with vascular dementia caused by small strokes, which damage the brain and impair the memory process.

Once the damage has been done to a person’s brain, it does not get any worse unless there are additional strokes. So, for years things have been consistent with some memory loss; add to that a hearing loss, and our life has been quite complicated.

To make things even more complicated, my husband has a difficult personality. There have been times of almost abusive behavior—verbally and physically—which may have been attributed to the disease before we knew of a medical issue. There have been frustrating times more recently when he would become angry—like when grocery shopping I would tell him, “No, we don’t need another pie,” and he would walk off pouting like a toddler.

There have definitely been times when I wanted to walk away from the marriage. But, as I came to understand the dementia and how it can affect a person’s behavior, I knew there was no way I would walk away. As we continue our journey with Dementia’s Demands, the road may become rockier as the forgetfulness continues to worsen. All I can do is look up and have faith that God will walk with us on our journey and give the strength that I will need to continue. (tweet this)

Anita currently teaches English to 7th-12th graders. She describes herself as a 'recovering cancer caregiver' who gives thanks daily that her husband has been cancer-free for ten years.

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  • Barbara – This is beautiful. I love the way you ended this…you know God has been there and will continue to be right beside you both during this journey. Love your heart. Thank you for sharing.
    Bethany Boring recently posted…Be My BlanketMy Profile

    • Thank you for reading and commenting! I am honored that I was asked to share this story of our journey; it is not over yet and I know that I will not be alone on the journey!
      Barbara London recently posted…God’s Nature and Other StuffMy Profile

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  • Barbara it is hard taking care of a loved one with dementia. It sounds like he has done surprisingly well for the past ten years! Bless you!
    paula recently posted…My Simple Woman’s Daybook-Edition November 10thMy Profile

    • Yes, with vascular dementia, it just stabilizes and may not ever get worse; but I fear it IS getting worse as his forgetfulness has worsened. And I know that my ability to go off and do things alone or with friends or my daughters or grand kids will come to a screeching halt one day and I’ll be taking even more care of him. I know the journey continues, but I also know who will be with us on that journey. Thank you for reading and commenting!
      Barbara London recently posted…God’s Nature and Other StuffMy Profile

  • You really have a great perspective. I’m praying for you as you walk this difficult journey. Just know that God is using you to help others in your situation. Keep hanging on to Him!

    • Thank you for reading and commenting! I would have NEVER dreamed that my little bits of writing would touch others, or be used to help others deal with their situations. I thank God He is giving me the words to write – and has in the past because a lot of what I used in my blog was from the early year; I edited a bit before posting to add to or make them clearer…never would I have thought…but here I am! Thanks to everyone who has read and commented on my posts, and encouraged me to continue writing…I can’t stop!!
      Barbara London recently posted…God’s Nature and Other StuffMy Profile

  • This is such a beautiful portrait of what it means to be a caregiver — to stay even when you may feel like walking away — because you understand the disease and you love the person who is struggling with it. God bless you, Barbara!
    The Momma recently posted…How Do I Become A Saint? — #ForAlltheSaintsMy Profile

    • Thank you for reading! Yes, it IS hard to stay sometimes when you want to walk away; but I know that would not be the right thing to do. I have peace about everything right now after my weekend retreat; I’ll need more of those weekend retreats as we continue our journey…but I know who will be walking beside me as I do continue!!
      Barbara London recently posted…God’s Nature and Other StuffMy Profile

  • My heart goes out to you, Barbara! This is such a difficult situation to be in, and it’s hard not to get discouraged. Especially when you see someone you love suffering like this and you can’t fix it. Thank you for sharing your heart today…

    Anastasia Rose
    walk-in-the-rain-with-me.blogspot.com
    Anastasia Rose recently posted…Discovering the Joy in PhotographyMy Profile

    • Thank you for reading and commenting! I know our journey still continues; the road will get rougher as time goes on…but I just cannot walk away as I wanted to at one time (or maybe it was more than one time!!)…God is with us on this journey!
      Barbara London recently posted…God’s Nature and Other StuffMy Profile

  • Thank you for sharing from your journey of caregiving. May God continue to be with you!

    • Thank you for reading and commenting…I know that God will continue to be with us on this journey…I hope as the time goes on, I can remember that as the journey gets rougher!
      Barbara London recently posted…God’s Nature and Other StuffMy Profile

  • Very beautiful, Barbara. Thank you for sharing your heart

    • Thank you for reading and commenting…I never thought I “had it within me” to share such writing! Some of the posts on my blog were written years ago when we were beginning our journey; this one – it is new and fresh and I am sharing in the hopes that others find what they need for their journey…not a writer; not a caregiver…but learning!!
      Barbara London recently posted…Found PoetryMy Profile

  • Thank you for sharing your story my friend! I can’t even imagine what your every day life is like as a caregiver. But you are right we get through it with Gods help.

    • Thank you Tara for continuing to follow my posts! It is also helpful to know that others are reading and commenting and touched…I would have never dreamed it possible!
      Barbara London recently posted…Found PoetryMy Profile

    • Thank you for reading this guest blog and sharing your comment. It is also with others who have given support and encouragement that I am able to continue on this journey, and to write about it!
      Barbara London recently posted…Found PoetryMy Profile

  • I taught on vascular dementia today… dementia of all forms, really, and how it can be most difficult on the caregiver. Great post! I’ve enjoyed following your series!
    Lauren recently posted…DisciplineMy Profile

    • Thank you Lauren…it gives me encouragement for those who “teach” it or “work” with it or “live” with it to affirm what I am writing…thank you for following my series – I’ve strayed away from it for a time and have posted other things like the “Found Poetry” (which is new!) and my Sunday Reflections. But, as our journey continues, I will be posting more! Thank you again for reading and commenting!
      Barbara London recently posted…Found PoetryMy Profile

  • Your story of care for your husband is so inspiring — especially when discussing how he acts like a toddler. Wow. Thank you for sharing and for continuing to show such an example of love.

    • Thank you so much for reading and commenting! It helps to have this encouragement to continue my journey and writing about it. It is only with God’s help that I do both and that the words that come out are inspiring others. You make me feel good about what I am writing – yet I am humbled that it is ME that is doing this inspiring…never would I have thought!
      Barbara London recently posted…Found PoetryMy Profile

  • Oh, Barbara. Thank you for sharing your heart, and what a beautiful portrayal of the realities of being a caregiver (which is EXACTLY what you are!), despite the messiness of it all.
    “All I can do is look up and have faith that God will walk with us on our journey and give the strength that I will need to continue.” Amen, sister in Christ!
    Kristin recently posted…Giving Thanks {Two}My Profile

    • Thank you Kristin! It IS only with God’s help that I can continue…and the encouragement that I received from others like you who read and comment on my posts. All are appreciated, and I am made humble that what I share is received so well! Thank you for your comment!
      Barbara London recently posted…Found PoetryMy Profile

  • Barbara, I cannot imagine what all this has been like for you and you are absolutely right to label yourself a caregiver. God bless you for your testimony here, and may He continue to grant you strength!
    Carol recently posted…Caring for a Parent with Multi-infarct DementiaMy Profile

    • Thank you for reading and commenting, Carol! I appreciate everyone’s support and encouragement; it helps me to continue, both on the journey and in the writing about it!
      Barbara London recently posted…Found PoetryMy Profile

  • Barbara, you and I are walking a somewhat similar path with a similar diagnosis. May God be very near to you, and provide exactly what you need each step of the journey. Thank you for sharing.
    Leah Adams recently posted…The Loft ~ A Tuesday Link Up ~ Favorite Fall RecipesMy Profile

    • I had to research sweet potatoes and yams when my husband and I couldn’t agree on what we had purchased! Don’t feel badly–it’s confusing.

      • Anita, you just never know what is going to set him off – and there is NO use in trying to argue if he says black is white, it is going to be white until he realizes differently!! Appreciate your comment – and your invitation to guest post…I am working on another guest post for The Imperfect Caregiver site. I have been encouraged by many who have read my blog; and with those and God’s help, I continue the journey and the writing!
        Barbara London recently posted…Found PoetryMy Profile

    • Leah, I read your guest post and realized that we are on a very similar path…did you see my post I titled “Multi Whaaat?” http://scrapper123.blogspot.com/2014/10/day-8-multi-whaaat.html That was my reaction when we received that diagnosis!! I pray God travels near you as well…and thank you for reading and commenting!
      Barbara London recently posted…Found PoetryMy Profile

  • Great post my new friend, thanks for the reminder to keep looking up. Oh, and 75 year old toddler made me giggle… I have a 66 year old toddler that lives at my house. 🙂

    • Thank you for reading, Tobi and commenting…yeah, I thought that 75 year old toddler idea might hit home for a lot of us caregivers!!! It makes me giggle too!
      Barbara London recently posted…Found PoetryMy Profile

  • Amazing how far I have come! Getting ready to write a guest post and thought it would be good to go back over what I wrote almost a year ago…seems like such a long time ago; and belive it or not, I was encouraged by the words of all the comments – even my own! I couldn’t believe the words had come from…ME!!

    Anita and Carol, I continue to follow you two; as well as so many of the onese who left comments “back then”…and we are still on that journey; though maybe a bit rougher, I am still “free” to come and go, as long as meds are set up, and there is food in the fridge!
    Barbara recently posted…Simple Woman’s Daybook – October 19, 2015My Profile

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