You might wonder by the time you finish reading this post, why I still like, in fact insist on, going on beach vacations.
“I can’t remember ever going to the beach and not having a problem with my skin,” I told Mark just this morning.
I have always burned fairly easily in the sun, and although sunscreen has been a fact of life for me as long as I can remember, I still inevitably end up with a burn somewhere on my body, often on my chest, upper back, and almost always on my face.
I stopped using sun lotion on my face several years ago after I was unable to find one that didn’t make my face feel like someone had sprayed gasoline on it and lit a match.
Now I trust only my faithful Oil of Olay daily lotion with broad spectrum SPF for my face. It only has a rating of 15, but I reapply it obsessively.
This year on our beach trip to the southern North Carolina shore I came well-armed. I bought Coppertone Sport high performance, broad spectrum, 30spf that “stays on when you sweat” lotion and spray. And I used both liberally in the first two days.
The third day I began to develop a red, bumpy, itchy rash. At first I blamed it on sun poising which I had self-diagnosed several years back.
If it hadn’t been for Mark, who liberally applied the lotion to my back at my request, I might not have figured it out yet. But Mark took his job seriously and put that lotion all over my entire back, most of which never saw the light of day under my suit.
The rash eventually covered all my exposed body except my face, thanks to the Oil of Olay. It also developed on my back.
The rash, I believe, is from the lotion I was using to protect myself. I revised my self-diagnosis.
Now I’m on a quest for sun lotion that I can tolerate, perhaps a combination of zinc oxide and titanium oxide that work to reflect the sun off of the skin. The other lotions somehow modify the rays to render them harmless.
I came to the beach also well-armed with light-weight long-sleeved shirts, and other various cover-ups.
Yesterday, I wore long sleeves, my hat and sunglasses and went to the beach sans lotion except for the Oil of Olay on my face. I sat under our umbrella the entire time, covering the bottom of my legs with a second cover-up, and taking an indoor break during peak sun hours.
At the end of the day I had a sunburn from mid-thigh to mid-calf where my legs had remained bare under the umbrella.
“What’s your next act?” Mark asked me this morning.
Today I look like a spy out of a low-budget movie—broad hat, sunglasses, long-sleeved shirt, and capris. A second cover-up protects the bottom of my legs and feet once I’m seated in the shade. Only my hands are exposed.
I still love the beach.
Tips, advice, and general commiseration are all welcome.
1. Being with Dad, even though he can’t walk, can’t talk, and may not always know who I am, is now a comfort instead of a grief.
2. We do what we have to do and priorities get clear in a crisis.
3. Moving Dad to a nursing home was not as terrible as I had expected and always dreaded.
4. Everything is relative.
5. I have an unlimited and unstoppable capacity to hope, like my mother.
6. No matter how much we may want someone to live, death will not wait.
7. Grief comes in unannounced and overwhelming waves.
8. Grief has a taste and odor and prickly needles and fills up your senses, and creates nausea, and is so much more than mere sadness.
9. Words of comfort are, in fact, comforting.
10. You can watch your mother expel her last breath, touch her cold hands in a funeral parlor, and sit beside her closed coffin at her grave, and have none of it seem real.
If I were an artist, or had any artistic ability whatsoever, I would paint the scene outside the window beside me where I sit with my feet elevated in a recliner beside Mom’s bed. She has just now fallen asleep so I will have to save her lunch for her when it arrives in the next few minutes, although I know she won’t eat more than a bite or two of this or that.
This room at Hospice of Dayton is comfortable and the service superb. Mom has been here under their care since Thursday afternoon when she left the hospital to transition through here before going back home to her new little assisted living apartment. “I just hope I feel good enough to be able to enjoy it here,” Mom said of her new apartment after we moved her in but before all the original artwork from family members was hung, framed pictures still setting on the floor in stacks leaning against the walls.
I do too, Mom. I do too.
Christmas evening my little celebration planned for her and Dad got derailed when the nurse taking care of Mom said, “I’m so glad you’re here. Her blood pressure is too high and we may need to send her out tonight.”
Mark and three of our kids went over to the nursing care unit to visit Dad, while I waited with Mom to determine the success of the latest attempt to lower her blood pressure to something considerably lower than the 247 it was currently at. The nurse, under the guidance of the nurse practitioner, had been working on this for over two hours. My siblings and I had been fighting Mom’s skyrocketing blood pressure ever since she found out about the cancer throughout her abdomen on December 2nd. Her blood pressure could have been high longer than that from the stress of taking care of Dad at home and helplessly watching his decline. We don’t know because Mom was unwilling to leave Dad and go to the doctor for her own medical concerns which included increasingly painful digestive problems.
“We think she should go out to the hospital,” her nurse said.
Mom didn’t want to go.
“I think we should follow the medical advice we’re getting,” I told her. “That’s what you want me to do for Dad, don’t you?” I need to make these kinds of decisions now that I am the health care power of attorney for both Mom and Dad.
“I don’t want to leave your dad,” she said.
Dad is a little walk away, through a door and down a long breezeway. And even though Mom’s not felt good enough since she’s been there to see him more than once, I made a promise I hoped I could keep, “You’ll be able to see him when we get back.”
So we went to the hospital on Christmas night. Hospice came there on Thursday. And we moved Mom to the Hospice care site for 5-7 days to try to get her pain and symptoms controlled and develop a care plan she will be successful with when she goes back home.
I have at least found a temporary place of rest here. I spent Thursday night in her room on the chair that converts to a bed. I lied, on the relatively hard surface, awake watching the tiny dots of green light float across the ceiling and down the walls from the projector on the shelf above Mom’s bed. It looked like a million stars in the night.
And now I sit and look out her window at the snow scene beyond. A lamplight stretches up beside a sycamore tree. They mark the edge of a pond. The limbs of the trees in the woods beyond the water are decorated with white. A bright red cardinal landed on the evergreen beside her window for a moment. It’s quite lovely really.
If I were an artist I would paint it.
I am reminded this morning of a book I read by Arundati Roy called The God of Small Things. It is set in India and is concerned about the sad and dangerous things that go on in the main characters’ family lives, set in a country where sad and dangerous things are happening on a much larger scale. So the main character prays to the God of Small Things.
The recent tragedy in Newtown has helped me keep my own tragedy in perspective. Although my parents are clearly suffering both physically and emotionally, there is some small comfort in knowing that they have lived full and relatively long lives. The children of Newtown have not.
We carry on and continue to march forward.
Dad is settled in his room at the nursing home. The room is semi-private and quite small which makes it difficult for his care. He is using a geri chair that takes up more space than a wheel chair, and they have to pull a Hoyer lift into the room to get him up or put him back in bed. It is quite a cramped ballet of movement when that occurs. We hope to get him moved to a larger room when one becomes available. His medical condition is a little complex because of the side effects from his prostate cancer radiation treatment years ago that have required him to be catheterized three times a day since. First he managed it on his own for a decade, then Mom took over. Recently we’ve tried the Foley cath but that probably led to the UTI and landed him in the hospital on Tuesday of our crisis week. Since we’ve had a variety of opinions recently from doctors in the hospital to the doctor at the nursing home, the Foley cath has been in, out, and now back in. It continues to be a big medical issue for him and may require a minor surgery for a surgically inserted cath. The Foley cath appears to cause him pain based on facial expression and body movements.
Dad’s swallowing ability has been evaluated at the hospital and re-evaluated at the nursing home. It continues to be a source of concern. He is on pureed foods only and nectar-thick liquids. Initially we had to give him his drinks by spoon, but a straw has been approved if it is well-monitored so that he only gets a sip at a time. We have to wait quite a while between bites of foods and sips of drinks. His swallowing reflex is very slow. The aides at the nursing home feed him most of his meals, but we’ve kept our morning home health aides working with him for a transition period. I try to visit at meal times to be able to feed him occasionally.
Mom finally got enough strength up to visit Dad on Thursday. She hadn’t seen him since he went to the hospital on the previous Tuesday night. We were in the middle of a Christmas party entertainment at the nursing home when Mom arrived with my sibling. Dad was crying every time a new song started, so it didn’t really feel all that much like a celebration to me. He did seem to listen attentively to the jokes and trivia questions from the entertainers. Mom wasn’t sure Dad recognized her at first. He did not respond as I imagined he might. He remained fairly neutral. I have no idea what he’s thinking.
Dad is trying harder than ever to speak. Yesterday I asked him to whisper because sometimes he was able to do that when he couldn’t actually talk out loud. I leaned in close over his bed, next to his head, and felt his warm breath blowing the wisps of hair from my forehead with his efforts to expel words. The speech therapist who is working with him on swallowing, thinks he may be able to use a communication board. Today I am working on getting photos to her of family members, foods, drinks, and other things he likes for her to make the communication board with. I am afraid to hope.
Meanwhile, my siblings are getting my mom ready to move. They are sorting through things as she chooses what she wants to take with her. Yesterday the dining room table held a stack of sheets and a few mementos. I took three family photos off the wall to hang in Dad’s room in addition to what we’ve already put up there.
The little Christmas tree and the Christmas bells still decorate the living room. One day soon I will have to return and take them back down without Mom sitting in the chair in the corner. At least I won’t have to look at the empty chair. It is going with her.
My mother is a study of perseverance and devotion. There’s no denying it.
For 51 years she woke up every morning; checked to see if Annie was awake; rolled her onto her back if she was; changed her diapers at first, then Attends as she grew older; got her up and into her wheelchair and pushed her into the kitchen for breakfast. With very little deviation, weekday, weekend, for 51 years.
Mom gave Annie her medicine; fed her breakfast; fed her lunch; put her back in bed for an afternoon rest; changed her Attends; got her back up; fed her dinner; then later put her back in bed; changed her Attends; changed her pajamas; rolled her onto her stomach and tucked her in, for 51 years. Every day without fail. Through it all Dad was there helping as he could, and he generally put Annie in bed at night, but in the earlier years he worked and wasn’t there a lot. After Dad retired and was home more he shared the responsibility for feeding Annie and most of her other care as well. But caring for Annie was an exercise in devotion and perseverance at which Mom excelled.
Now Mom wakes up every morning; checks to see if Dad is awake; helps him roll onto his back if he is; gets him up and into his wheelchair; pushes him into the bathroom to help him change his Attends; and pushes him into the kitchen for breakfast. With very little deviation, weekday and weekend.
Mom gives Dad his medicine; helps him eat his breakfast; puts him back in bed for an afternoon rest; gets him back up; makes another trip into the bathroom with him; prepares, helps him eat, and sometimes feeds him dinner; another bathroom trip; and then later, puts him back in bed. Every day without fail. Mom has home health aides helping her a few hours every morning and each evening, but Mom continues to take responsibility for Dad’s care. Caring for Dad is an exercise in devotion and perseverance at which Mom excels.
As Dad becomes increasingly less responsive, Mom responds by becoming increasingly more engaged. Like in her care of Annie, Mom rises to the occasion. Sometimes I feel as if I am trying to shout through tiny chinks in a brick wall to get through to my dad, to get his attention, to have him raise his head and look at me, to strike some tiny spark of interest in his eyes. Sometimes I think of giving up. Sometimes I wonder, what is the point. But not my mom. She shouts louder. Tries harder. Never gives in.
My mother is a study of perseverance and devotion.
There is simply no denying it.
Mark finished physical therapy for his bilateral knee replacement surgery on March 30th. I think he broke all records for recovery there. Maybe they’ll put up a plaque. I’m just very grateful that this whole process went as smoothly and as quickly as it did. We lived with the worry and fore-knowledge that someday we would have to face this knee replacement surgery, and now it is behind us. That’s a very good feeling.
Mark is living pretty much a normal life, although his leg muscles bother him if he tries to do too much, and he is still under prohibition of three movements (twisting his knee back and forth to put his foot in his shoe, crossing his foot over his knee in a sitting position, or kneeling) until the 3-month mark at the end of April. Mark also continues to do his at-home exercises that basically consist of leg lifts using ankle weights. He continues to ice his knees down after he exercises or if he has used them extensively like in the following slide show.
I took these photos April 1st, after we lost our redbud tree. The hill he’s walking down is very steep. I never attempt to go down it, but always go the long way around. Although Mark doesn’t bend his knees to work as he might have before the surgery, as you will see, he is perfectly capable of getting the job done. I offered to help him, but then decided sometimes I am the most help by just staying out of the way.
It’s nice to see him working in the yard, as he loves to do that and I wasn’t sure that would be possible this spring.
It’s also very nice to see him able to take out the trash.
You can see links to the complete series of posts about Mark’s bilateral knee replacement surgery here.
“I can tell when your dad is having a bad day the moment I first see his face,” Dad’s home health aide Paula says. “On those days I don’t even try to get him into the shower.”
One of the insidious things about Alzheimer’s is how unpredictable it can be. Just as soon as Mom and Dad have become comfortable with a routine Mom has established in Dad’s care, whether it is how to prepare, cut, and serve his food to him, to how to transfer him into and out of his bed from his wheelchair or walker, something will shift and the practiced method either no longer works or needs adjustment.
When Dad has a bad day he is not as attentive, or responsive, and doesn’t seem as able to follow any kind of request or command, like “take a small step forward with your left leg.” Or “move this leg” as you pat on the left leg. Or “keep going” when he comes to a complete stop in the hallway from the bedroom to the bathroom, his left leg shaking, as he clenches the walker out in front and Mom holds onto him from behind.
When Dad has a bad day I wonder how much longer he will be able to walk even the very short distances he does now. I wonder if it is wise even to let him try. I wonder if he is going to fall in the hallway and we will have to call 911 to get him back in his wheelchair or his bed.
When Dad has a bad day, everyone else is more attentive and responsive. The tension in the house mounts as the uncertainty level rises. How long is he going to be able to walk? What if we can’t get him back in his bed? How long is Mom going to be able to handle this during those times she is here alone with him?
When Dad has a bad day we talk again about getting that hospital bed. One day we remove the computer desk from the bedroom. Then later that day Dad is able to get up and walk with his walker to the bathroom. So we wait. Another day we rearrange the furniture making space for a hospital bed. Then we wait again.
One of the most challenging aspects of Dad’s particular case is that almost from the very beginning, he has been cautious about, even perhaps afraid of, turning around. I first started noticing it when we were still driving him to doctors’ appointments. First we had to get him to turn around to get into the car. Then he had to turn around to sit in a chair in the doctor’s waiting room. Sometimes I would walk right up to him and hold him. “Dance with me,” I’d say. And I would shuffle him back and forth and around until his back was towards the chair and he could sit down.
I don’t understand why he has such a fear of moving that way, but I think it probably has something to do with a loss of spacial orientation. It makes transferring him anywhere very difficult.
Because of this, the method Mom and the home health aides use to get Dad back into bed is have him face the bed (no turning around required) and crawl up onto the bed onto his stomach. This has worked fairly well for quite a while. But if we get a hospital bed, they will have to find a new way to get him into the bed. The advantages of a hospital bed (he can sit in a reclined position and watch T.V., Mom can raise the bed if she needs to care for him in some way or change his clothes) go away if he is lying in the bed on his stomach.
I like the idea of a hospital bed. I think it will help Mom in caring for Dad. I think it will give her options if Dad is having a bad day. But I also understand there will be a hurdle to overcome in making it work.
Nothing is easy with Alzheimer’s.
Especially when Dad is having a bad day.