When Judene and I visit, we listen and observe. Later we brainstorm to identify obstacles, needs, potential solutions, and how we can help. But at this point, we have tabled our thoughts until the more immediate fundamentals are taken care of. Sam doesn’t need more on his plate than he can handle at one time and right now his plate is full:
- First of all, there has been some progress since funding has AGAIN been approved, but there is still no green light on the flow of funds.
- Secondly, Gloria has decided that the physical aspects of providing care are too difficult for her to handle. She and Sam have made good progress at working together as a team. But the fact remains that it is essential that Gloria is able to work independently so that Sam has the ability to come and go more freely. Katie has gained 50 pounds since becoming disabled and has almost no ability to assist with her own movement. Gloria is not a young woman and she is small. The concern that she will lose her own health and well-being is undeniable.
Some ideas for Sam: You are spending most of your time at home in the role of caregiver. You need to learn to step back and try to reconnect with Katie as her husband. I know that’s quite a challenge because Katie has changed. It’s like forming a relationship all over again, and learning to do things differently the second time around.
- Start with small things like: having breakfast together at the kitchen island; discussing the news of the day; planning for an outing or two each week.
- Find free time to go off by yourself, especially when Katie is napping; reconnect for dinner and TV or a movie during the evenings you do not work.
- Hire another caregiver to assist with getting Katie ready for bed.
Some ideas for Katie: You would like to walk again and are frustrated that every day is the same as the day before. You need to learn to take control over your life again by speaking up, taking responsibility, and making choices. Work on developing the perseverance to do things that are difficult for you.
- Set small / short-term goals.
- Establish a routine to do cognitive and physical therapy, and then DO it.
- Read on your Kindle.
- Get help to work on picture books on the computer.
- Write to Gabrielle Giffords to share your experience.
Some ideas for Sam and Katie:
- Go to church services.
- Join a Stroke Support Group so that Katie feels like she can make a contribution.
- Try other community outings.
- Attend the grandchildren’s sporting events.
I often hear caregivers express different perspectives about their own children’s involvement in the caregiving situation. If we are embroiled in a difficult experience, of course we don’t want a like-burden for our kids. But is it really a good idea to shelter them from all responsibility?
As I said in What to Do about Mama? “Baby boomers are on the precipice—getting ready to fall off and land firmly on the backs of our children’s generation. And they are so young! They are, after all, our children!” (WTDAM p.1)
I think I can safely say that none of us wants to be our children’s
Some folks see caring for parents as a given:
- “I’m not really sure what I thought about caregiving in the beginning other than it was what needed to be done, and as their children, this is what we do for our parents.” (WTDAM p.86)
But, in spite of any stated “willingness” to assume caregiving responsibilities, we are resolute in our desire to not saddle our own children with like-obligation.
- “I know I don’t want the roles to be reversed and hope I never to get to that point.” (WTDAM p. 115)
- “Given my experiences, I just hope I will have saved enough money so I can hire help, too, should the need arise. I certainly don’t want my kids to end up with this much responsibility for my later care.” (WTDAM p.120)
- “We want to minimize the impact on our daughter, who is five hours away with a very busy young family.” (WTDAM p.187)
Yet others point out their perception that caregiving was a positive example for their children, expressing the hope that the experience would contribute to their children’s personal growth.
- “I feel it taught my children many valuable lessons as well.” (WTDAM p.57)
- “I think it was wonderful for my two children to witness how we cared for their grandmother. We always gave her respect and showed gratitude for all that she had done for us. She needed us, and we were there for her. Although my children (young adults) were involved in the process, I probably would have involved them even more.” (WTDAM p.196)
Some were pleased with the contributions their children made.
- “Each of our adult children had an area in which they were able to offer help and advice; each offered to do what he or she could do from a distance. Our family has drawn together as we helped each other through this.” (WTDAM p.146)
Others were not.
- “I was disappointed that my children did not develop a more loving relationship with their grandmother.” (WTDAM p.171)
- “My family had difficulty coping with the time I spent on my mother’s demands. They felt resentful at times. My children have their own lives now; they support me, but not my mom; they visit only at my request.” (WTDAM p. 219)
Some children expressed gratefulness to their parents for taking care of their grandparents.
- “I know from a personal perspective (and one of NOT being a full-time caregiver) that I enjoyed having my grandparents living with my mom. I didn’t worry about them being alone or having to care for themselves as they got older. Plus, it was enjoyable for me having the whole family together under one roof when I visited. As far as my grandparents were concerned, it was a very pleasant experience for me.” (WTDAM p. 139)
- “My daughter said, ‘Thank you, Mom, for taking care of my Grandma and being such a good example for me.’” (WTDAM p. 28)
In my own caregiving experience the greatest amount of support that we received for immediate and unplanned caregiving needs was from our son and two daughters. They involved their grandmother in all their family functions, brought their children frequently for visits, picked her up from the senior center when needed so that I could attend support group, and sometimes either visited or took her to their homes when we had no other coverage. The girls sometimes shopped for her when she needed clothing items or OTC medication, and returned and exchanged the items if they weren’t “exactly” right. Their support for their grandmother went well beyond what we had expected.
It fulfills me to know that my husband and I were good role models for our grown children. Keeping their interest in mind, I saw caregiving as an opportunity for a “teaching moment,” (well, actually more than a moment), where they would learn and internalize the real meaning of family commitment (and never did our children disappoint).”
We are glad that our grandchildren were able to know and love their great grandma, and that we gave my husband’s mother the gift of our children and grandchildren. We are proud of the love, support, and appreciation they showed her.
- “Most importantly, at least from my perspective, was that she was central to the active life we were blessed to have with our family—three of her grandchildren and eight of her great grandchildren. She was always concerned about whether the little ones would remember her after she died. A short while ago the oldest said to me proudly, ‘I was the last great grandchild to talk to Great Grandma.’ She would be pleased.” p. 206
So, no matter the perspective, ultimately our children will experience pain related to our decline and our passing. They will discover that they cannot control the process of dying. And although we cannot, nor should we, protect them from the responsibility that lies before them, maybe we can at least prepare well enough that their road will be a little smoother to travel than ours has been.