Choosing to Laughby Debora Nelson Carmichael
My family all thought I’d finally gone off the deep end. To be fair, they had some reason for concern: I was about to marry a man with MS. Not someone who would get sick after many great years …more
Reflections of a Caregiver
Reflection of a Caregiver
by Ingrid Shelton
“Your husband should be in a care home,” the social worker had told me when I picked up Phil from the hospital after a stay of several weeks. “He is somewhat paralyzed and will need more care than you can provide.”
For a moment I was speechless. But then I said, “I know he wants to be with me at home even now. We do not want to be apart.”
“You will find out that it will be too difficult for you to care for him at home,” the social worker replied. “Call me then.”
Later, I thought about the social worker’s assessment. The doctors had been unable to diagnose the reason for my husband’s growing leg paralysis. Even though I realized caring for him might be difficult, I did not want to send my husband to a care home. Instead, I hired a nurse’s aid to help me with some difficult tasks like bathing and to stay with him whenever I needed to go out, even for a short time.
I rented a commode for Phil’s needs at night, then a wheelchair, so that I would be able to take him outside. Only 100 lbs, I found the wheelchair quite heavy to fold and put into the trunk of our car. Yet, I did it gladly when I realized how much he enjoyed the outing, especially sitting on the beach in the sunshine, watching the antics of the seagulls and the boats gliding along on choppy waves.
My life now revolved around my husband and his needs, his medical appointments. Somehow I did not think about the future. I was too busy living in the present. I assumed that once one of the specialists would determine the cause of his paralysis, he would point to a cure. I shut out of my mind any other possibility. We never talked about what would or could happen next.
Phil often looked sad. I knew he thought he was a burden to me especially since I did not have any type of social life. But I assured him that I would rather stay at home with him than go out anywhere without him. Even though his legs were not working as they should, his mind was in perfect order. It seemed that my attitude rubbed off on him. If I sounded upbeat and optimistic, he also felt hopeful and encouraged. If I smiled at him, he would smile back. As the weeks went by, Phil’s legs got weaker and weaker. The two specialists we had seen so far could not determine the cause of his growing paralysis.
Then, came the night when Phil wanted to stay up late and reminisce. Finally, when ten o’clock rolled around, I said. “I think we should go to bed now. You have a specialist’s appointment in the morning.”
Suddenly, Phil looked at me earnestly and said, “Who is going to take care of you? Who will drive you around?”
“Oh, I can look after myself. And I have been driving us around for a while now.” I tried to alleviate his concern.
“Time is short,” he then said.
“Yes, but we still have lots of time left together,” I said, wondering what he meant and helping him to bed where he closed his eyes immediately. When I gave him a quick kiss on the forehead, he opened his eyes, gave me a crooked smile and one last loving look before falling asleep.
The next morning after I got up, I waited for him to awake. When he didn’t wake up at his usual time, I tried to wake him. To my shock and horror, he had already slipped into eternity. Pain and grief shot through my soul as I realized that my husband would never open his eyes again.
Later, I thought of our last night together. Had Phil had a premonition that he was about to leave this earth? Why hadn’t that thought ever occurred to me? I berated myself. Then guilt surfaced. Had I given him the care he had needed? How much had his self esteem suffered because of his paralysis? Had I affirmed his self worth again and again? Had he really felt loved unconditionally? What if I had been the one requiring 24 hours a day care? How would I have felt if I were the one receiving care? I will never know the answers now.
Alone, I had all the time to myself I wanted, but I missed Phil terribly. I felt I would rather have looked after him the rest of my life even as an invalid than live without him. Yet, I realized that God had a plan for both of us. For me it was to care for him for just the last few weeks of his life. Perhaps I would not have been able to carry that responsibility long term because of the physical and emotional toll it had taken on me.
Would I have changed the way I looked at care giving had I known my husband’s time on earth was short? Yes, certainly. I would have made every day, every moment count to improve his emotional and mental well being. I would have given him a hug every day. I would have told him over and over that I loved him. I would have assured him that he was okay the way he was even with his limited physical ability. I would have encouraged him to hope for the best. I would have bolstering his sagging self esteem by affirming his self worth. And, most of all, I would have prayed with him and for him every day.
Today, I am still not sure if I had scored high enough on those points. However, in hindsight with my limited knowledge and experience as a caregiver, I had tried to do the best I could at that time, and I am at peace.
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June 13, 2012 at 11:34 am | Posted by Caroline Austin Swaney
Ingrid, You are such an inspiration to our/your family. Your courage and strength are an inspiration to all of us. We are so greatful to have known you and Phil, and have Jennifer as such an important part of our life! Love, Caroline, Elliot, Madeline, Anneka, Puddin', Poo Kitty and most of all The Baby Dexter!
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June 15, 2012 at 5:41 pm | Posted by Ingrid
Thanks, Caroline, for your encouragement re story. Also, thank you so much for being such a good friend to Jennifer. She loves all of you and the girls are very special to her. Love and blessings, Ingrid
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June 15, 2012 at 11:43 am | Posted by annie mcdonough
Ingrid, You did all of the right things at the right time. Your story left me in tears, but they were tears of remembering what I went through with my husband. I asked all of the same questions as you did. Yes, we shall never get an answer, but knowing in our hearts the love we fealt for them was unconditional, and real, was enough. Doing what is necessary for the people we love is being human and a divine intervention takes over. I just recently lost another brother, and wonder those same old questions. I am currently taking care of my 85 yr old mother, and want to give her the best quality of life we can for as long as she has on this earth. You have inspired me, to forget about the what if's and what for's. I know now as you do, it was our calling one way or another. Thank you for making me aware of my quilt. You have lifted a burden off of my shoulder and for that I am thankful. Hope u are well and keeping ur head up. Thanks Annie
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June 15, 2012 at 12:42 pm | Posted by Sharon Grindstaff
My husband was diagnosed with cancer. He wanted to be home and I couldn't picture his not being there. Gradually, his health (weight, etc.) decreased. One time, a radiologist said "Uh Oh" and I realized he'd accidentally hit the spine. Within a few weeks, Bud couldn't walk. I could lift him and we could go just about anywhere he had the energy for. God gave me a special gift. This will sound awful but I have a dreadful gag reflex ... but for nine months, I had no sense of smell. It wasn't a gift, it was a blessing. It wasn't until several weeks after Bud left us that I realized I could smell again. Other caregivers will understand, I'm sure. But the main blessing God gave us (in addition to unwavering faith) was that we had time to mourn together ... then get over it and enjoy our few months together. You will always see something in a store or on tv or while you're out and think, "Oh, I'll have to get him one (or show it or tell about it). Part of him will always be with you. It has been 26 years and this still happens. But my reaction is, "Oh, darn" but not sad or miserable. I realize what I'm going to say now will make you discount everything I've said so far, but there's more to it in a way. This was the second time I'd been widowed. My first husband died at age 25 in 1968, 44 years ago. It was quick and I'm sure he didn't know what had happened. And I still see things that make me want to share with him. But we never had a chance to say goodbye, to talk about what life was going to be like for me and our little ones (ages 18 months, three and four). God never stops taking care of me. My joy comes from knowing I'll see these two wonderful men again. But, honey, be ever so grateful for the time you had with your husband. That, by itself, is a real gift. God be with you.
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June 15, 2012 at 1:03 pm | Posted by Brenda
All we can do is our best, with the limited knowledge and recources we have each day. I'm sure Phil knew you loved him and your time with him reflects that love. Don't look back, look up...God is still on the throne and He cares.
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July 25, 2012 at 10:58 am | Posted by Joseph
The family shulod actively participate in their senior's home care. It is true that home care offers a reassuring and personalized setting. But before hiring a home care agency always check if they have a which gives the family an oversight on how care is being administered.
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June 15, 2012 at 1:51 pm | Posted by Diva
You did the right thing after all he was your husband.Now that he's gone you need to focus more on yourself
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June 15, 2012 at 3:16 pm | Posted by Patricia
I am so so sorry for your loss, I lost my dad about 12 years ago now but we still say that we made every day the best that we could for him, my mom still questions herself on decisions she made and ones she wished she had but on the overall we did the best for him, making his life as full as it could be. My dad suffered from PSP (Progressive Supranuclear Palsey) and it affected his gait, his speech and swallowing, his mind was there but the illness took his ability to walk and towards the end to speak and swallow. He always tried to maintain his dignity and never once complained, I don;t know how, he went from being an active retired 62 year old to a housebound person, he loved his family, enjoyed all the little things he still had and was so gracious about the bad hand that he had been dealt. Your husband sounds alot like my dad and you sound a lot like my mom. You did the best you could and I know in my heart that your husband knew that as well. Be kind and gentle with yourself like you would if you were talking with a friend....
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June 15, 2012 at 7:18 pm | Posted by Judy
May He who formed you, and who knows you better than you do, fill you with abundant blessings and protect you from all harm.
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June 16, 2012 at 3:16 am | Posted by Julie
You are a wonderful caring person. I think you can rest assured your efforts to make your husband comfortable in his last days were successful.
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