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.
Last Tuesday, when Mark’s physical therapist asked him how he was doing, Mark said, “I just want to be normal again.”
“If you were normal,” the therapist said, “you’d still be walking with a walker right now.”
As I’ve been pointing out all along, Mark has recovered to this point quickly. He can do most things, excepting the three prohibitions mentioned in the pre-op class. He stopped all prescription pain medicines and is back to taking only Motrin twice a day. We think the Lyrica really helped with the pain because Mark’s discomfort level has risen since he’s been off of it.
Mark is scheduled for physical therapy twice this week and will need to go once or twice next week. After that, we don’t know. We expect he will be finished soon.
Then it is just a matter of time to heal completely. We were told initially that it takes three months, after that he is no longer prohibited from kneeling, etc.
I wanted to include a video of Mark walking down the hall, getting down on the floor and back up again, and walking down and up a flight of stairs.
I took the video over the weekend but somehow lost most of it in the transition to the computer. All I have left is Mark sitting with his legs up on his desk, sipping a Cosmopolitan, straightening up from getting off the floor, a laugh in the background, and a head shot as Mark approached me during his stroll down the hall. Since I think I was lucky to get the video in the first place, and I don’t believe my actor will be willing to do a retake, you will have to take my word for it.
All is well. And we feel lucky to have made it this far in Mark’s recovery so soon.
Three weeks after surgery, Mark is walking around the house without a cane. He has started doing minor household chores like clearing his place after a meal and emptying or loading the dishwasher. Yesterday he refilled the birdfeeders.
Although he walks well, he still walks slowly, and doesn’t like to be on his legs for very long periods at a time. Since the surgery we have gone out to lunch, dinner and breakfast. Last week he went to Macy’s at a mall with me. I parked at the Macy’s entrance so he wouldn’t have to walk a great distance. While the sales clerk was assisting me, Mark sat in a chair in the shoe department (which isn’t really all that different from what he might have done before the surgery).
Mark went for his two-week post-op check with his doctor last Wednesday where he was told he only needs the cane when he goes out in public. I don’t believe I’ve seen the cane in his hand, here or when we’ve gone out, since. He has been set free from the CPM machine and no longer needs to wear the tight hose, unless his legs begin to swell.
Mark wants to drive to his physical therapy today. His therapist has told him he probably could drive as long as he can move his foot back and forth without pain. I plan to go with him. I’m not comfortable with him driving on expressways yet, but I think he will do fine going the short distance along primarily residential streets to physical therapy. He is pretty worn out after therapy and I suspect he will not want to drive home.
The doctor recommended he continue to take the Lyrica and Celebrex, neither of which are narcotics, until his supply runs out. The Percocet remains up to his discretion for as long as he needs it. He has not taken any for two or three days. Prior to that, he was only taking one in the middle of the night when he couldn’t sleep because of discomfort in his legs.
With the removal of the outside bandage, Mark is now allowed to take showers. This hasn’t been as big of a deal as he anticipated because he felt the sponge bathing he was able to do worked out pretty well. I shampooed his hair periodically.
The removal of the staples was a non-issue because there were no staples. Mark’s incision had been closed with a single internal stitch that will dissolve, and steri-strips on the outside that will curl up and drop off. Overall we both think his scar looks good, much better than I, for one, had anticipated.
We didn’t actually see the surgeon at the appointment, but saw his physician assistant. Later, Mark’s physical therapist said that it was a good sign that the assistant did not think it necessary to call the surgeon into the room. The physician assistant gave us prints of the x-rays of Mark’s bionic knees.
If you look closely at the above picture, you can see that the knee cap also looks like it was resurfaced.
Mark is experiencing a little numbness on the outside of his knees. It is noticeable, but not particularly problematic. He knew this was a possible side-effect of the surgery.
Mark continues to do the physical therapy exercises here at home: front leg lifts, side leg lifts, and bending knee lifts (not the proper name for this exercise). He does them three times a day, 50 repetitions on each leg. He’s started adding leg weights to his ankles.
We are grateful that Mark’s recovery has gone so quickly. Last week the woman beside him at therapy was four weeks post-op from a single knee replacement and was still using a walker. I don’t think Mark’s recovery made her feel better. We can’t really explain it except to say that Mark had an excellent surgeon, he’s relatively young, strong, and healthy; and he prepared himself by doing the recommended exercises prior to surgery; and faithfully continues to do them now. And he is extremely
And maybe an angel or two in heaven are looking out for us.
Two weeks ago today I was sitting in a hospital waiting room while Mark was having his three-hour total knee replacement surgery. Last Thursday Mark put away his walker and started using a cane. His physical therapist continues to tell him he is way ahead of schedule on his recovery. We don’t really have an explanation for that except that his surgeon did a great job with the most updated techniques and appliances, and Mark is determined and has been aggressive with following his recommended exercise routine. I’m thankful for how fast he is recovering and proud of him for how hard he is working at it with little complaint.
Last Friday at therapy he was told he could cut back even further on the CPM machine, but the therapist did not want to make the decision to stop it, and wanted to wait until the doctor released him from it. So Mark is using the CPM 2hrs on the left leg, which is a little stiffer, and one hour on the right every day.
Mark is finished with the blood thinner shots. He still takes the Lyrica and Celebrex pain meds every day, but has cut way back on the narcotic Percocet and primarily uses it at night if he has trouble sleeping.
He will see the surgeon on Wednesday for his two-week post op appointment. After that we hope to be done with the CPM machine. Mark also hopes to be done with the tight hose he has to wear to promote blood circulation in his legs. He will undoubtedly ask the doctor when he can drive. He also wants the doctor’s advice about when he should back off the other pain medicines. On Wednesday we expect that Mark will have his staples removed and we will see his incisions for the first time. He has been wearing some kind of silver-embedded bandage on each knee since surgery that is supposed to prevent infection. And finally, Mark should be able to shower following his doctor’s appointment.
Mark has three physical therapy appointments this week and again next week. Then we will find out what comes next. The time has gone fast for me so far, but the day of surgery seems a great distance away in my mind. It’s a funny thing about time.