The tears began to fall down her cheeks. A business-savvy wife and long-time entrepreneur asked, “When will it end?”
She felt so guilty. She was really asking when will her caregiving be over. “I’ve given everything I have to care for him. My business is suffering. How much longer will this go on?”
She knew what she was asking. “When will my husband die?”
She was exhausted. Juggling her husband’s requests while caregiving and trying to fulfill the demands of her business were more than she could handle.
Caregiving is difficult. Each family is unique. Each family’s situation is different.
While caregivers try to juggle multiple demands, there are those who have never walked the road, who are quick to judge. They don’t understand the day-to-day toil, especially toward the end of life and the mental, emotional, and physical demands.
The best I could do is to comfort her. I knew her and assured her that she was indeed a loving wife and caregiver. In the final weeks of his life, he experienced alternating bouts of dementia and delirium. He had feared getting Alzheimer’s and yet, he had enough cognitive capacity for us to work on a project together. The time I spent with him gave his wife a caregiver respite. For her, this meant directing her attention to her business.
In his lucid moments he felt purposeful. He would often fell asleep mid-sentence or become disoriented. Still, we managed to share a sense of humor. This is just the way he wanted it—working and contributing until the very end.
Sometimes, caregivers need a little help. Someone to spend a little time with their loved one. She was willing to have an in-home caregiver; however, few were willing to make the long drive to her rural mountain home.
When he died, I attended his celebration of life where his wife planted a tree in his memory.
For more information—
Major Funding Proposal to Support Families’ Long-Term Health Needs – NPR
At the very least, this funding proposal sheds light on what’s important to keep caregiving families viable and to sustain America’s caregivers.
The Diamond Tip of Caregiving
Care for your loved one the way you would want to be cared for IF you were living with the same disease or illness.
Caregiving in the U.S. — 2020 Report A PDF will open of these comprehensive findings on caregiving, support, technology, and long-range planning. See page 4 for Contents.
I am a 78 year old caregiver to the of love of my life. He has dementia now for six years. the situation has left me depleted, with no sense of purpose or hope for any future. The correct word is listless. I get some free time from someone that I hired, but all I feel is sad and hopeless.
Francine, this is so disheartening and why caregivers must engage in respite, regularly.
I am glad you are doing this, already.
And you have taken the biggest step–that is being aware of your current situation and even writing about it.
Now, for the next step.
While your love deals with his own coping and loss with dementia, I would imagine he would be heartbroken to know how you are feeling.
If the tables were turned and you had dementia, would you want him to suffer as you are now?
The next step then is to consider who can you talk with. Can you call friends, family, or even go on an outing as COVID restrictions life with others for a few hours?
The change of pace will really make a big difference and renew your outlook.
With hope you’ll find the right answer for your next step and take action,
Brenda