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:
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.
As of last Monday, Katie has been home for six weeks. I would like to report that everything has worked out and this care plan is now sailing smoothly. But since most of you are probably caregivers, you already know that there’s always a problem to be mitigated just around the next bend—especially in a scenario as complicated as Katie’s.
Ironically, even improvements bring with them another glitch. When I visited Katie on Tuesday, she was especially quiet and blue. When I asked her about it she said, “I’m not sure I will ever walk again,” and, “Every day is the same as the last.” I asked her if being home was better than living in the nursing home and she replied, “Oh, yes!” But, because Katie is much more aware and much more expressive she is also recognizing the profound extent of her limitations, unlike in the nursing home where she just slept through time.
On Tuesday, Sam said that for the past three days Katie had been crying out again. He doesn’t feel that he can stand it if she doesn’t get a handle on her pain. But then during Thursday’s visit he reported that Katie had shown improvement again–hence the roller coaster analogy. The OT recommended that Sam and Gloria give Katie a heads up before each and every movement when transferring and providing personal care. I reminded Katie that it is her responsibility to maintain control—she is the only one who can do it. Of course we remember to acknowledge the difficulty of bearing pain and to lavish her with praise when she does well.
The biggest UP that I can report is that Katie’s room is finished and that Gloria is now able to provide care independently for those times Sam must be away from home. That alleviates the need for Sam to make arrangements with the neighbors to cover when he is working at his part time job.
The biggest DOWN is really a bummer. The transfer of funding from the nursing home to the community was supposed to be a “seamless” process. Seamless, indeed! There has been NO transfer, so none of the vendors have been paid for the environmental modifications, consumable products have not been provided (such as diapers, wipes and barrier cream), delivery of equipment has been held up (such as the combination shower chair-wheelchair), and most importantly, the agency caregiver has not been paid (because she is living in the home 24/7, all she has received is her room and board). Obviously, this is causing a great deal of stress for everyone involved, and the problem needs to be rectified soon.
I have a few ideas for dealing with some of these problems, but I will leave that for the next post. In the meantime, I would sure appreciate hearing any thoughts and suggestions you experienced caregivers may have to offer.
Easier said than done…I’ve got concerns.
Judene and I have picked up our visiting schedule. Sam still feels that Katie requires two person assist—not only for transfers with the Hoyer lift, but also for repositioning and changing diapers and clothes. So we’ve been helping out when he goes to work.
And indeed, Katie is a handful when providing personal care.
Gloria gets frustrated when Katie cries out because of course she doesn’t want to hurt her. But really, it’s impossible not to. I stressed to Katie that she has made good strides (because she cries out much less often) but that she needs to continue to work on it. I stressed to Gloria that she needs to try to disregard the “OW OW OW’s.” She is, after all, doing the best she can do.
I asked Gloria if Katie was the most physically challenging client she has ever worked with. She replied that she had worked with another individual with like-disabilities, but that there was always someone in the home to help her with the heavy lifting. As I said previously, Sam needs the freedom to come and go without having to constantly make arrangements, and that the success of this plan rests on the caregiver’s ability to work independently. So at this point, I continue to:
It would be unrealistic to expect a move of such gargantuan portions to occur without challenges—and even chaos. “It’s really hard,” Sam stated when Judene and I visited again today. And yet, we observed real progress in the midst of the confusion.
First of all, Katie’s living area is in the middle of renovation—new laminate is being installed to facilitate use of the Hoyer lift and wheelchair. The bathroom has been gutted in preparation for converting the entire space into a shower room that includes a commode and pedestal sink. Also, ramps are being built outside to improve wheelchair accessibility. So it’s noisy and busy with the workers coming and going, but the end product will definitely enhance Sam and Gloria’s ability to provide Katie with the best of care.
Secondly, two weeks ago, Sam stated, “I can’t see Gloria being able to transfer Katie alone; it is a two-person job.” He has been arranging for neighbors to help on the evenings that he works. Today Sam was much more optimistic, and said that he would try transferring Katie solo tonight, and if that works, Gloria will try next. Of course they will be there to spot each other and make sure that Katie is safe.
Thirdly, Katie has a home health company that provides visits from a nurse, physical therapist, and occupational therapist. Those services will end soon because it has been determined that Katie does not have the potential to make significant strides toward being able to transfer (let alone walk). However, they have shown Sam and Gloria how to do stretching exercises with Katie to keep her extremities less locked. The exercises will be a part of her regular routine of care, especially since Gloria reports that Katie now cries out much less often.
Most significantly, Katie’s mental and emotional state has improved dramatically in a very short period of time—literally overnight. Through the act of bringing Katie home she has gained some sense of having control in her life. The result: Katie has dubbed herself “Captain Commando.” How great she feels to be at the wheel of her own ship.
Katie sang, Katie laughed, Katie smiled.