Routines can yield different results
After we moved into our wheelchair-friendly townhome my husband settled into a routine quickly. With intensive therapy my husband’s paralyzed legs started to improve. He learned to stand, to pivot on one foot, and to take steps with the aid of a walker. Therapists asked him to practice walking every day and he can walk the width of our home twice. Today he didn’t walk because he felt so weak. While a routine provides structure to caregiving, it may not be the same every day.
Adjusting to a new place takes time
We lived in our former home for more than 20 years and were used to three levels, a beautiful yard with wildlife, a garage with drop-down stairs and attic storage. As beautiful as our townhome is, we don’t have enough storage space, and always seem to be looking for things. I used to have a home office with a wall of book shelves and a large work counter. Now my “office” is a desk in a notch cut from the laundry room. Some days my husband and I feel like we’ve lived here for years. Other days we feel like we just moved in.
Adjusting to disability is a daunting challenge
When it comes to being a good sport, my husband is a champion. He has adjusted to so much—three emergency operations, a spinal stroke that paralyzed his legs, the need for a colostomy, having the colostomy, and caring for it. This care involves new medical terms, equipment, and procedures. Neither of us feel colostomy care is our new normal; everything about the process is abnormal.
Chronic disease takes a toll
If your loved one has cancer, heart disease, diabetes, or another chronic disease, you know it takes a toll over time. With medication and specialized care, chronic disease may stabilize for months or years. However, the word chronic implies that the disease will worsen. Since you can’t predict your loved one’s decline, or how long she or he will live, you can’t settle into a new normal.
Life may be drawing to a close
Several times, in the last two years, I thought my husband would die, and had acute anticipatory grief. I recognized the feeling because I experienced it before, and written extensively about it. Unless you take steps to combat anticipatory grief, it will take over your life. Life is up in the air and you wonder if anything will be normal again.
Family caregiving is a challenging enough, without looking for a new normal. We may never achieve this goal and that’s okay. Caring for a loved one, and savoring each moment, is what’s important. Love is our normal and gives us strength and courage for the journey.
Yes so true
Thank you!!
True!
Thank you for this great post.. it is exactly how I feel and I think my hubby as well .. our normal ( whatever that was) changed in 2007 with a stroke , then heart attack in 2011 followed by open heart Etc etc…
Presently hubby is at a re Hab after yet another hospital stay and should be home soon..
We came close to losing him several times and that anticipatory grief is real … it that isn’t bad enough there are professionals constantly telling us how we should think , feel and expect to feel .. also what we should do or not do and when to do it..
And others telling us where we need to live and how we need to live .. at this point we try to enjoy each day and live in the now .. our plan (care plan ) is to care about each other and live and love in the moment .
..
It becomes exhausting and I have to tune them out as much as possible
So thank you for this post .. it really helps.
Thank you so much for your post. Although your life isn’t normal, you are alive and helping your husband. I wish good things for you both.
Hi Harriet! I enjoy reading your post! You are a strong woman. I am sorry for all you have to go through. You do make it sound easy sometimes. But I know it is not. With me being sick and being a caregiver to my husband its never normal and never easy. I look for the new normal but like you said there may not be a new normal. Just be. I appreciate your transparency and your vulnerability. It helps give me strength and hope. Praying for strength and peace in all your journeys. Thanks for doing what you do here. Because it helps me! Thank you and God bless and sending hugs to you both. Marie Grace