Dec 032012

In the summer of 2011, my sister Gina and I held the distinction of having two parents in the hospital at the same time. On top of that, they were in different hospitals; one hour apart. I was drawn to our mother, and my sister was pulled to our Dad. We didn’t pressure each other. Our natural abilities paired with what each parent needed at the time.

Gina is a doctor in teacher’s clothing. She can read hospital monitors and converse with doctors as if she is their colleague.

That’s what my father needed as he suffered with lung cancer. My mother needed an emotional touchstone, while doctors ran test after test to determine whether she’d had a minor stroke and the extent of her dementia.

That would’ve been all well and good if I wasn’t also a mother of four, a wife, an adjunct professor, professional actress, small business owner, and writer who occasionally likes to sleep. (My list is no longer than most people these days.)

To be there for my Mother I had to borrow from all of those areas at a cost. When I was with her, I felt guilt for not tending to my other roles and vice versa.

This wasn’t going to be temporary, either. After her one week hospital stay, we transferred her to a nursing home with a dementia unit. She would not return to the home she’d lived in for forty-six years.

Embracing the role of caregiver

I felt responsible for my mother’s well-being, as if she were one of my children. It wasn’t until I embraced that notion that I found a way to manage the responsibility.

Attention given to mommy wasn’t “taking from” — it was “a part of” being a caretaker to my whole family. My heart was already open to taking care of Mommy. Embracing her as a dependent enabled me to open up my life and see a bigger picture.

Also, it didn’t take away from my Mother’s dignity, grace or everything she’d accomplished in her life that she needed my care. Circumstance had converted our relationship. I needed to let go of being “the child.” That label no longer applied, and I had to make a mental shift in my thinking to move forward.

I suppose I could have left my Mother’s care to the nursing home but the magnetic pull was always there.

The adoption of another dependent was the best way for me to take on my role as caregiver. A role that chose me but I was honored to play.

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About the Blog Author Tania Richard
In addition to being a wife, mother, writer, actress and teacher, Tania Richard was a caregiver for her mother, who was diagnosed with dementia in 2011 and passed away the following year. In the short time Tania was her mother’s caregiver, she learned a great deal about the challenges caregivers face.

2013 ALTY Blog Award Nominee

  24 Responses to “Embracing the Caregiver Role”

  1. Thank you! Wow I have been struggling with the famous guilt complex. I never felt like i was there for the rest of the family the way i should be. Thank you for putting it in another perspective.

  2. Its odd to me how some people easily fall into this role, while others are the complete opposites. 1 of my brothers is as far from the caregiver role as possible, while the younger one pretty much fits it to a T. Very interesting.

  3. My Mother went through this for about two years before she left us, and for about a year it was frantic for us then it dawnd on me all that she was going through wash very real to her and that the issue where with ourselves and that is when we decided that we where living in her world and not ours, so all I can say is to love them all that you can and then love them even more

    • thanks John so true..

    • But John my husband is in his 6th yr of Alzheimer's. 2012 was a bad yr for us. Started with hospitalization for pneumonia in March-suffered seizures in the hospital (I had to call Alzheimer's Association to find out that seizures can happen with this disease) may have suffered mini-stroke. This along with incontinence, unable to get out of a chair. He went to a local nursing home. He is receiving good care. Now falling a lot. I did not realize how emotionally, physically worn out I was. Now my prayer is that God will not let him linger in the state for long.

    • I love your words! My mother is late stage Dementia and in a nursing home. I see her almost every day and feel guilty when I'm not there. But I cherish the time we are together. She only knows who I am anymore and I know I bring her comfort and happiness.
      Doing the best I can,

      • You are doing good Juli, I never wanted my mother to want for anything while I was her caregiver.. I made that promise to her before she was diagnosed. She was my everything..I did not care that she had 3 other children who loved her dearly was not there all the time as I was.. Just did not matter. I cared for her in her own home (turned it into a Nursing home) and did the best I knew how. I never wanted to leave her alone at the end while in Hospice Center as she went in peace. Love your family members who you care for with all your heart. This is the purpose God sent for you to do.

  4. My mother was diagnosed w/dementia in early 2011. Four of my five siblings and 3-4 of our children schedule ourselves to go to her so that she can stay home in her comfort zone. My two sons, two of my brothers and I take turns spending the nights as Mom is never alone. We just don't know what she will do that might endanger her safety and, at nite, she's afraid.

    She's forgotten how to do pretty much everything to some degree, even make a cup of coffee. So the girls help her bathe choose her clothes and get dressed (she's totally baffled by what to do w/her bra), my sister makes the daily meals and provides the daily care (either by paying for it or being there herself), we all make breakfast after our nites and I do the laundry (a lot since sheets and towels get used once w/so many using them). My sons and I work full time.

    • What a wonderful thing to see a whole family pitching in on a 24/7 – it still would be hard and heartbreaking, but good for all of you not to be on a 24/7 watch on your own. Also great I am sure for your Mom to see and communicate with so many of her loved ones.
      That’s what family should be about – Good on you and may you all be Blessed in your other endeavours and responsibilities.

  5. I dread going to do the caregiving sometimes but I love taking care of my mother. I read to her, especially the Bible and the Watchtower magazine. We used to play Spades, but not lately. I recently resolved to talk to her more, not just care for her like a pet or a plant, but communicate, read more since she can't do it herself. What's feeding her soul if I don't? I know Jehovah's going to undo all the damage caused by Adam's sin soon, like untying a knot, freeing my mother's brain to live and learn as it once did.

    If her brain forgets to tell her lungs to breathe and her heart to beat and she falls asleep, I know that Jesus will awaken her as his Father awakened him and none of this will be called to mind. (Isaiah 33:24; Revelation 21:4, 5; Isaiah 65:17)

    In the meantime, we all take care of her as she took care of all of us. Next week, we have a family meeting, as we often do to make adjustments to changing circumstances. We'll make sure it changes as little as possible for Mommy/Grandma.

  6. Last nite, Mom asked me if I think someone forgot their teeth and took hers. "Somebody moved" or "somebody stole" every thing she misplaces, which is pretty much everything she touches. To help us get out of the house on time, I sometimes have to push her a little because she daudles, rummages, repeats herself, retraces her steps and makes such a mess of her closet that I do things for her. A few days ago, after a frustrating morning during which she refused to go with me, she eventually came wth me and began to sob in the car. She said, "Why do you take everything from me?" We always tried to let her do what she can, but I try a little harder now, even if I have to do it over when she turns away or forgets.

    • My mother in law is suffering from severe dementia, and is residing in a wonderful assisted living . We knew she was having problem with memory and many day to day tasks when my father in law was still living, but had no idea how much he did for her in order to make her look normal.It is painful to see how this kind, educated, and classy lady, has turned to what she always hated and afraid of, and prayed to be gone and not transform to. She resembles individuals with multiple special needs. She behaves very much like a person with autism or fragile x syndrome, she need to repeat things over and over, and they have to be done just so, and needs consistency. She was the best mother and grandmother to all of us, and I love her dearly, and will take care of her until her last day on earth, but also pray for her to leave us peacefully one day soon. This is not what she wanted in her old age. Modern medicine has made a lot of progress in keeping people alive longer and longer, but is not able to keep mind and body on the same level of ability. This is not what I want for me and my husband. It is not just memory lapse she is suffering from. She hallucinates, sees frightening things that are not there, is afraid of her lamps because they are saying bad things to her when they are plugged in. She sees a door in her shower that her next door man is using to come in and do all kind of horrible things to her. She takes everything from her closet and drawers hundred times a day and puts them back, which probably gives her a sense of control. She is accusing everybody of taking her belongings. She is being tormented by these painful thoughts, and people who are doing things to her. Unfortunately, she can't take any drugs to ease her fears, and she is tormented day and night. Perhaps, some of you reading this, may think I'm being unkind, or tired of looking after her, and that is why I wish for her a peaceful passing one day soon. I ask God for that because I love her, and this is not the way we want to remember her. This is not the way she wants us to remember her. God bless you all wonderful, selfless care givers. I know what you are going through.

      • I see alot of what my mother is going through. She has a very hard time at night. My father is her caregiver and I help out too. She is refusing right now to have some test done in order to see if she has had a mini stroke or not. My father will not allow me to go into the dr. because he is still trying to hide it from everyone. But she has left the house walking and has called the police several times so I think everyone knows.

      • You have expressed exactly how I have been feeling for the past several months as I have watched my mother degrade rapidly over the past year. She hasn't had the hallucinations but has the suspicions of other people – especially my dad. Modern medicine is great, but sometimes it is too good. I say the same prayers as you do, that she will pass peacefully one day soon, and have the same feelings about what I do and do not want for myself and my husband as we get older.

        It helps to know that we are not alone and that others are going through the same things that we are, and having the same feelings.

  7. My Dad died from complications of Alzheimers this past April. I remember a distinct "changing of the guards" where our roles reversed while he was still at home. At first, I cried and cried, as he had always been my rock. Once I recognized this as a unique gift I would get to experience during my time here on earth, I was able to embrace it and actually grew to love it. He went from home to assisted living and finally, after breaking a hip, to a nursing home where he died two years later. I am now caring for my Mom in my home. She has different needs as her problems are more physical but again I am looking at this experience as a gift of time with her before she passes on to her next life. Caregiving is NEVER easy but the rewards are incomparabke.

    • Hello Christine
      I have only now come to this blog and find it very helpful to see the heartbreaking comments shared by others who are dealing with their loved ones' terrible battle with AD. Caring for a loved one is a very lonely road and it is comforting to share these views and emotions with other caregivers.
      Love conquers all and we can only hope and pray that God gives us the strength to keep that love strong.

      • my mother has AD and my father is her main caregiver. He is having a hard time accepting it. He will not let me in with her to see the doctor so i can't ask questions. Christine, what kind of complications did your mother have. I think my mother has had a mini stroke but can not convince my dad to have her do the test. Of course she is refusing, she thinks everyone is out to get her.

  8. This is very beneficial information. Tania I hope you keep writing more blogs like this one. Thank you for the article Tania.

  9. I have been a caregiver for just over 6 years now. My husband is young, just turning 68 next month, I am turning 65. Most of my time and energy is spent on him, people tell me how amazing I am, but there is no choice. I have very few to help me, 2 children, one cares, one doesn't. Friends and family may mean well but they aren't there every day, nor every week or even every month– you are the one and only. How long can you be strong and hold on, hard to say!

  10. _

    My first comments ..where to start? My husband has been diagnosised w AD at 73. He is clearly at stage four and on two medications for this. It is difficult for him to accept this because he has always been in control. I fear the unknown…how fast will he much will he change ..will I be able to do this with love, patience and strength needed. Soon I will have to deal with his driving or rather not driving. I am really dreading how devastating this will be. I pray to my heavenly Father Jehovah for hislo e a.d guidance.

  11. "Learning as I Go"

    Mom moved in on January 1, 2013. She is in mid-stage dementia. During the early stage she lived with my sister and when things progressed to the point when my mother could not be left alone, it was my turn. I have quit my job, my sister went back to hers and Mom has moved in with me and my husband.

    When Mom lived with my sister, I had her on weekends and now- she goes to my sister's on the weekends. That way we all get a break, including my mother.

    Financially, we have managed first by reimbursing my sister with the funds which would have paid someone else to care for Mom. Now that I have quit my job, those funds reimburse my household.

    I agree with many others- not everyone in the family is cut out for the "caregiver" role, but most can help in some way. My brother will pick her up and take her to a movie or to take her to visit his family for a couple of hours. This is a tremendous help!

  12. I believe it is important for children to understand Alzheimer's disease so they can still interact lovingly with family members who have this disease. I am a 17 year old college junior, Alzheimer's researcher, and Alzheimer's advocate.I grew up as a caregiver to my great grandmother who had Alzheimer's disease. After her death, I founded a nonprofit organization that has distributed over 24,000 puzzles to Alzheimer's facilities. Recently, the book I coauthored explaining Alzheimer's disease to children became available on Amazon.My hope was to provide some helpful coping mechanisms to the many children dealing with Alzheimer's disease among their family members. 50 percent of the profits from this book will go to Alzheimer's causes. I think this book could help a lot of children and families."Why Did Grandma Put Her Underwear in Refrigerator? A Book Explaining Alzheimer's Disease to Children."

  13. Hi there,

    I have been a young(ish!) carer for my mother-in-law, who suffers from dementia, for the last three years now, and find I can embrace the situation best via poetry.

    I am in the process of creating a new poetry site primarily aimed at carers, but also people with dementia as well –

    The blog is an honest account of my experience of caring over the last few years in poems – some silly, some exasperated, some happy, some sad – of my last three years caring for my mother-in-law, who suffers from Alzheimer's disease, and is aimed at helping to support other caregivers in a similar position.

    If you would be happy to link to me, I would gladly return the favour!

    DG x

  14. I don’t even understand how I ended up right here, but I thought this

    post was once great. I don’t understand who you’re but definitely you are going to a famous blogger

    in case you are not already. Cheers!

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