Sudden illness changed my caregiving role
My disabled husband hadn’t been feeling well for several weeks. He became so weak that he couldn’t use a transfer board. Worse, he didn’t know what year it was or what day. I called 911 and an ambulance took him to the hospital. Tests were run and the diagnoses were pneumonia and a bladder infection, two things that sap physical and mental energy.
There were new things to learn
A physical therapist prescribed leg and arm exercises for my husband. She showed me how to assist him and gave me two brochures. All of these exercises require help and encouragement. Indeed, I think my encouragement is as important as my husband doing the exercises. I feel like I’m cheering us both on.
New tasks were added to my daily schedule
Each caregiving day is packed: four loads of laundry, folding laundry, medication management, grocery shopping, preparing healthy meals, keeping our townhome clean, paying our bills, monitoring investments, and helping my husband with self-catheterization. Add exercises to this list and the day is gone. I have little time left for me.
Interrupted sleep takes a toll
I try to be in bed by 10 p.m. but this isn’t always possible. Although my husband is able to self-catheterize, sometimes he calls me in the middle of the night. Once I’m awake it’s hard to get back to sleep. Lately I’ve been waking up between 4:30 a.m. and 5 a.m. Once I’m awake I may as well get up for the day. Around mid-afternoon I start to get tired, and there are hours of caregiving ahead of me.
I worry about finances and family members
The ambulance trip to the hospital costs about $1,000. We received the hospital bill today. Three nights and three and a half days cost more than $10,000. Although our health insurance pays the majority of our medical bills, we still have co-payments and out-of-pocket costs. Several family members are facing their own health challenges and I am concerned about them.
To keep caring for my husband I have to care for me, and have made some changes. I started by studying the physical therapy brochures and memorizing the exercises. When I prepare a meal I fix extra food for future meals, and this saves me time. An afternoon nap (when possible) has been added to my daily schedule. Our financial advisor came to our home and updated us on our finances, which reduced some of my worries. Lastly, I connect more with family members and friends and this boosts my spirits.
Caregivers are worthy of self-care. Let’s practice it!
So true… of course I take my mom to every doctors appointment and keep up with her care 110%, but as for me, not so much – I haven’t been to the doctors or dentist for myself since I started this “journey”…
self-care is nonexistent in this thankless job, unfortunately…
Agreed – I definitely consider simply getting sleep self care.
Always exhausted. A full nights sleep would be self care for me.
I am exhausted morning, noon and night.
Going to bed IS self care!
It’s exhausting. The guilt does hit u even if for a moment. Who’s going to help out when things are not done, ,,,,,crickets, lol. Ur on ur own, lots & lots to do, so very little time & energy.
If I let myself set down even just for a moment I fall asleep, I wake up in just a few and feel guilty. So much to do. Care for my wife, care for the farm, care for the farm animals and babies, care for the sheep dogs, get feed, clean house, wash clothes, cook meals, go to dr. Go to therapy, put in the garden, get ready to can our food, the to do list is long. There just is not enough of me. Yes Erika Morley, tired so tired, I agree.
Your words made my day. Thank you for that..
God bless you.
Self care has gotten so much harder since my son is so much older and his needs so much greater. I recently just realized wow how did I forget about me. Now how to make time I have no clue. I’m just tired so tired.
FOR ME SELF CARE IS VERY LIMITED AND I SEE NO WAY OF THAT CHANGING.
Good morning
Presently my hubby is in the hospital .. I am having a hard time in my mind to make myself relax a bit while I can .
Even when I am home I am on the phone talking with doctors , nurses , home health , re Hab , and family..
My hubby has had major health problems since 2007 starting with a stroke that took his right side..
Then heart attack , open heart , by pass , new valve, vascular surgery, toe amputation , gall bladder surgery , CHF , diabetis, etc
Since hubby is homebound and I am home with him most of the time I fashioned exercises I can do everyday.. While I’m making coffee in the microwave , I stand and do a series of leg exercises ., I learned from hubby’s therapist..
I have a two pound weight next to where I sit and I lift weights for arm exercises
While in bed I have leg exercises I do at night and in the morning I learned on a video online
So far so good ..
I write poetry and articles as an outlet for myself
As I sit here this morning being able to enjoy the stillness of not having to do anything for a short while I almost feel guilty .. And I know I shouldn’t ..
I’m recharging my batteries for the next challenge that is sure to come .. Sooner rather than later ..
Hubby will go to rehab for a short while to get legs stronger so I need to start marking his clothes
God Bless you all
Theresa
Thanks Ron. We do need to adjust the way we do things and it’s good you know that.
Thanks for sharing this. It’s a good reminder that we might need to adjust the way we do things to care for ourselves when the circumstances change 🙂
Thanks for your comment Mary Grace. A paid caregiver comes to our home every morning, holidays included, and stays for two hours to get my husband up. I don’t know what I would do without the caregiver’s help. This help costs a lot and, although this is difficult, we’re willing to pay it. Writing helps me immensely and I don’t know what I would do without it either. Caregiving is a journey of its own and I never dreamed that I would write a series of books about it.
Hi Harriet, I have followed your articles and you have helped me a lot. I here you! I also understand. You helped me to make sure I take care of me and now you must do the same. We can’t do this ourselves and we won’t be here if we don’t take care of ourselves. I am very fortunate to have a very good caregiver to help us. I have MS and so does my husband. Our girl helps him with everything 3 days a week. I do the others. She helps in the house also. As my husband gets worse we add more hours. I had to go away this past weekend. I was completely useless to myself and others because I was so empty. I am so glad that you have reached out to all those that you have. Taking naps and having others to lift your spirits. Financial advice. Having these things will help fill you back up. When I start feeling like I am going into my reserves I try and head it off before I am empty. Not always easy but getting better. Bless you and your husband. Praying for strength and peace. From someone who truly understands. Big hugs. Marie Grace