I am a wife, a mother, and a grandmother. I have always enjoyed needle arts and have been a quilter, and a teacher of quilting, for the past twenty years. I have periodically nurtured a small pattern business which I will introduce to this blog over time.
Well we are at the end of week two in the skilled nursing facility. It has been at times stressful, at times rewarding. I begin my days there between eight and nine and go home between nine and ten in the evening. Most days I stop and get Danny so he can spend a few hours with his dad. He remains remarkably kind and gentle with his dad. It comes as no surprise because he has the heart of a care taker. he once had a room mate with epilepsy who occasionally had seizures when the guys were on their own and Danny knew what to do and did it. Of course one of the reasons he likes coming is he has great affection for the therapy staff. They seem like a great group of kind, concerned people.
The first week was a little rocky for me. We came from the hospital with a boot for dale's left leg, a splint for his left arm to control the curling of his fingers, and a brace for his shoulder. It appeared that no one at the facility knew how to use these things. it took almost the whole first week for there to be continuity in that part of his care. The boot has what we are calling a kick stand and it is rarely used. Makes the boot kind of useless. Working on it. The most upsetting of all is that in the first few days no one used a belt to to transfer Dale from bed or back to bed. The majority of them actually put their hand under his left arm. I have to say I got more than testy the day that two aides told me they were not trained to use the belt. I spoke to anyone who would listen.
Not as stressful but annoying is that in that first week they lost more than two thirds of his clothing!
Things are improving, but I still need to be there and no apologies. We had both Christmas and Dale's Birthday this last week. Christmas was pretty nice though not our traditional party. Dale tires easily so he was in and out a couple of times, but he really loved having his family around. He keeps telling me I don't have to spend so much time there, but I know it helps him to feel safe and cared for. I gave him a lap top as a Christmas gift and he is a little excited but not ready and doesn't have the stamina to do anything with it yet, but soon perhaps. Our son-in-law was so helpful, setting it up and loading Dale's favorite flying game and researching the latest version of that game. John is a very caring and kind man.
This week for the first time we are hearing that there is real improvement in Dale's swallow. I did not think you would be too excited by an example of actual swallow therapy, hence the above picture. Swallow, get it? Of course you do! We are on the way to losing that peg! He still has a way to go but finally there is real hope for the loss of that tube. Being able to eat is crucial to his coming home and his well being.
I just want to thank all who have expressed support for my family. We are so grateful for each of you. I wish for you all even a fraction of the love coming our way.
This was an odd day for me. For most of the day I felt like I was watching the day unfold from a distance. I think I have been in denial as my most fervent hope was that I would be bringing my husband home, but that was not to be. Kelly and I looked at a few SNF programs and Quail Creek Skilled Nursing Facility stood out for the atmosphere, personnel and it's therapy program. The problem I am having is that in the end, the decision was mine. He is fragile right now and has essentially turned his fate over to me. So I suppose this disconnect I have felt all day is about that but also about my own feelings about this kind of thing. How could I in good conscience put him in what is essentially a wing in a nursing home when in reality I have always known that I do not want to be in that position myself. it doesn't matter how wonderful the facility is, I hate it that he is there instead of at home.
The new therapists seem nice and competent and so he should improve. However, the first group, Dave, Nicole, Neale,etc are a hard act to follow and we will miss them. They cared!
If Dales name is on Santa's list it will come up under naughty as well as nice. He is a tease as well as a loving husband and father. All he wants for Christmas is to come home. So, our Christmas will not go back into the box until he does come home. Heck, I know people who's tree's are still up in March because every day life continues and life is too busy. So ours will see the spring for the love we share.
I just thought I would say something about how Danny is adjusting to seeing his Dad in the hospital. In the beginning he avoided going to see him and frankly, Dale was so sick that first week, so unable to lie still that I was hesitant to push him to go. However once he made that first visit he has been asking to visit almost every day. Now I do have to say that part of the attraction is the therapists who are so kind and seem to enjoy his chatter. After all they are hearing his stories for the first time. But as the days go by I have witnessed another dynamic that touches me in a way that I had not expected. When Dad is restless, Danny is up immediately to rub his back, ask him if he is okay, gently lift that left arm and replace the pillow under it making sure it rests above the heart.
At one point today there was a lot of activity going on in Dad's room and we were kind of in the way, so we walked down to the waiting room for awhile. I had a book so was reading and Dan was playing with his DS. Things got so quiet that I looked up and saw him deep in thought. After a moment he looked up and said he had a Christmas wish for his dad. His wish was for dad to be able to eat, able to walk and able to drive his jeep. I couldn't say it better myself.
Yesterday was a little difficult. The difficulty actually began a few days earlier when Kelly and I met with Kim. This is the person who makes recommendations to the patient and or family of a stroke victim about such things as skilled nursing facilities (SNF), refitting our home to accommodate such things as wheel chairs or walkers, bars for bathing, the list is long. Dale is fairly adamant about not wanting to come home until he is more self-sufficient. I am getting trained in transfers from chair to bed, etc. I worry about caring for him with a "peg" but am game for almost everything. I want him home!
In any case Kelly and I looked at two SNF facilities yesterdays. Loved one the other not so much. We will see a couple more over the next couple of days and choose so we will be ready for whatever comes.
It is beginning to look like he will not be home for Christmas. It is difficult to write the words. We have always been together for the holidays. It is not to say we won't be together. We will bring Christmas to the hospital or SNF. It will not be home, but we will all be together. As I write this I remember other Christmases that were out of the ordinary. When our son was a little boy, he often ran a fever, you guessed it, on Christmas day. I remember one holiday when Santa brought him an electric car. He was so excited!!! He figured out the process and proceeded down the hallway and back a few times. It got quiet and when we checked, we saw he had laid his head down on the steering wheel and was sound asleep with very pink cheeks revealing he once again managed to be ill on Christmas. Over the years Dale worked weekends and such. There were several times when we began Christmas at the end of shift that day. This year with our extended family we will once again be celebrating not on Christmas eve or even Christmas morn. With an extended family our holiday will begin Christmas afternoon. So if you know what I am getting for Christmas, shhhhhh. I won't know until late in the day and I love surprises, both given and received!
This is harder. However I know well that we will make this work and there will be joy
Now, he rarely wears a necktie but would tell you that when he does, the best part of the day is when he can remove it. That is much like his relationship with the feeding tube he has sported for almost two weeks. One of the problems that came with having a stroke was that he simply could not eat enough food to sustain his health. He said he was never hungry, began refusing meals so the tube was certainly a life line. yesterday after a barium swallow test the doctor approached us with the suggestion that he remove the feeding tube and replace it with a "peg." We agreed and now he will get nourishment directly through his stomach. This is scary, feels a little like giving up. However, the truth is that the feeding tube was interfering with the swallow therapy as his throat is very narrow. Now the swallow therapy should be easier. Dale? he is more than ready to get rid of the tube that has kept his throat so sore for the last weeks. As I write this I can look up and see him sleeping soundly and looking more comfortable than I have seen in weeks.
We have had a somewhat friendly rivalry going for almost twenty years. I keep him in line by maintaining that men are high maintenance and therefore I am not doing this again. If I happen to live the longest I tell him, "I am not looking to have another man to pick up after, train, flatter, well you get the idea." He more than half believes I am telling the truth so he has a scenario of his very own. He has decided if for any reason we are no longer together, he will rent space at a large quilt show and display my quilting things. He says he has grown accustomed to the quirks and eccentricities of a quilter so he believes staying in the genre will be easiest to do. He will display "my featherweights, quilt frame, silk ribbon, embroidered samplers, fabric stash. vintage sewing collectibles, and most of all my quilts." It is at this point i give him the "look" and he backs down a little. That "look" appears to be genetic as my mom had it and so does the daughter and now the twelve year old granddaughter! Just yesterday he told me that he hopes I never believed any of that nonsense as he sees only my face in his future. We are among the lucky ones. Forty -nine years and counting.