Last Sunday Manny, Judene, Dave and I joined Sam and Katie in their home for a dinner and game night. We had done this a few times at the nursing home, but as you can imagine, this was SO much better.
Sam had set the table with the good china, silverware and crystal.
Dave had a hankering for Indian Curry, and I worried a bit because everyone had professed they didn’t like curry. But this dish had always been a winner for us, so they all agreed to give it a try. Curry is served over rice with condiments: onions, tomatoes, bananas, coconut, peanuts and chutney. Thankfully, it was a big hit, especially accompanied by a nice Riesling from the Finger Lakes. Judene brought Manny’s favorite spice cake with caramel icing for dessert. Dinner together—like times gone by.
We played Sequence, one of Katie’s favorite games, and although she has a lot of limitations, she was able to do pretty well and had a good time.
Sam enjoyed talking to his buddies. We were all happy to get together again in familiar surroundings.
When I visited Katie again later in the week I asked Sam, “How’s it going?” He replied, “Pretty good!” That’s his most positive response to date. I am encouraged.
For the first time, I am reporting to you with a sense of confidence.
The problem with funding has been rectified. The only major item remaining to be acquired is the shower wheelchair.
The change of caregivers has taken place. “Faith” started last Sunday, and already she is a comfortable part of the family. Faith is a take charge individual. She sends Sam out of the room when she performs Katie’s personal care. Moreover, she is a task-master with Katie’s exercises. This is important since Katie has lost a lot of her inherent drive.
The experience with Grace was an opportunity to learn and a sturdy building block for a successful experience with Faith. Sam has learned that he can step back and let Faith do her job—he is in fact, eager to do so. It is obvious that Sam is relaxing as stress decreases.
With Faith, I hope to believe:
THIS PLAN WILL SUCCEED!
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.