See the The Imperfect Caregiver website: for discussion and an audiobook excerpt. Love this website!
My friend suffered from a brain injury during surgery in December 2012. She was impacted physically (with the use of only 3 limbs), mentally (hard to determine since she maintains many thinking skills and abilities), and emotionally (personality has changed in significant ways). It’s confusing because despite the losses, when it comes to her mind, there is much that has been maintained. So it is particularly frustrating for her spouse when my friend expresses one particular delusion that she insists is true, when obviously to everyone else, it’s false. The delusion: she walks. I usually hear her husband say something about it is common sense she cannot walk and she should know that. My response to her is that her desire to walk, her dreams and recollections so strong, that it is easy for her to believe she walks–and then I add that I think it is delightful that she is able to enjoy that memory so realistically. I’m not sure what the experts would say about this but to me, it seems a workable compromise between the two extremes of believing and disbelieving. Read the whole story in “What to Do about Mama?” by Barbara G. Matthews and Barbara Trainin Blank.
Katie’s Story in Twenty-five Episodes:
Part One (October 2014)
Part Twenty-five (April 2015)
It is important to consider the living environment you can provide when you are considering moving a parent into your home, according to the Caregiving Support Services article How to Prepare your Home When a Senior Loved One is Moving in: http://mycaregiversupportservices.blogspot.com/
The article discusses the following factors:
- Storage space
- Bedroom with single floor living capability
- Handicapped accessible bathroom near bedroom
- Look for Ways to Make Mealtime Easy
- Make way for mobility devices
- Consider outside spaces
As detailed in What to Do about Mama? my husband and I felt good that we were able to provide his mother with a great living environment when she moved into our home. Very little preparation was needed.
David and I gave Mom our first-floor master bedroom suite—bedroom, bathroom, and sitting room—and filled the rooms with herWhat to Do about Mama? p. 12
furniture and doll collection.
Another caregiver reported the following:
My husband and mother-in-law discussed the options. She hadWhat to Do about Mama? p. 125
the choice to move to assisted living, or to utilize her finances to
add a handicapped-accessible living area onto our home, which
was what she opted to do. We built a large living area with a
handicapped-accessible bathroom that extended off our existing
family room so we could provide the assistance she needed.
Ironically, some years later that caregiver was able to return home to live after a traumatic brain injury because she had that living area and a a 24-hour caregiver.
There are many factors to consider when moving a parent into your home, but having a safe personal space to live is certainly important.
Katie’s life before her TBI was full of profoundly meaningful activity. Katie was dedicated to helping others in a multitude of ways. (See “The Plan” Katie’s Story Part Six.)
Katie’s life now revolves around her daily care.
Additionally, however, there has been significant improvement in her social interaction. She is able to go to church. Friends come to visit, and together they enjoy activities like dinner and movies and games.
But I’ve been thinking about ways to rekindle the element of altruism that was once integral to Katie’s objective in life.
I asked Katie if she would like have a pen pal, and suggested
Gabrielle Giffords http://en.wikipedia.org/wiki/Gabrielle_Giffords or
Sharon Budd http://www.pennlive.com/midstate/index.ssf/2014/10/victim_of_i-80_rock-throwing_s.html
The idea did not pique her interest.
I talked to Sam about joining a support group so that he and Katie could have the opportunity to both give and receive encouragement by sharing common challenges with other brain injury patients.
Sam did not discount the idea entirely, so I think I will bring it up with Katie at our next visit.
Sam did say, however, that he is not personally under a lot of stress, and although that is probably not entirely true, I will say that his demeanor has improved greatly. Sam appears to be doing better than I have seen him for more than two years.
When I asked Sam specifically if life has improved for him since Katie came home, he replied, “Yes.” This I was obviously pleased to hear.
I’ve been struggling somewhat over continuing to blog Katie’s Story. There is no longer any “big” news to report—and that is a good thing.
So, although I will leave the door open for future posts about Katie, I would like to sum up Katie’s Story with the following observation.
Life is unpredictable and sometimes catastrophic. What happened to Katie was tragic and overwhelming. Although Katie’s life will never be the same as it was before her brain surgery, it is better. Arriving at this place was improbable, but every effort has been worthwhile.
In my November 18th post: The Plan, Katie’s Story Part Six, I recounted that when Sam decided to pursue the idea of bringing Katie home I e-mailed the social services director at Aging with the request that she facilitate the agency process. She told me that she was retiring in a few months, and that the nurse (who I really wanted to do the assessment) was leaving the agency in a couple of weeks, but that she would do what she could to help. Because she followed through with her commitment and got the ball rolling at the agency, everything fell into place as I have reported throughout Katie’s Story.
I recently invited this lady to join me for a visit to see Katie. I wanted her to be able to witness how “The Plan” was working (which none of us expected to come to fruition) and how her efforts contributed to the dramatic improvement in Katie’s living condition and outlook on life. She was duly impressed.
I’m betting that what she saw will be a highlight for her whenever she thinks about those last days winding up her career.
At the top of my TO DO list I have added:
It’s been a cold snowy winter, but…
Change is in the air and
spring is just around the corner.
Sam took Katie to church.
Sam took Katie for a walk outdoors.
Judene and I took Katie out to sit on the deck.
A couple of neighbors stopped by.
Does this all sound:
Well, maybe so…but in this case it is:
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.
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.