Today, mom is gone having a good respite with good friends. Dad and I are just hanging out…chillin. As mom was walking out the door, she says, ‘here’s a box of old photos that you might like to go through.’ So, as dad starts pushing around his wheelchair, using his little Bissell 3 in 1 vacuum, I settle in to look over old photos. Old indeed. Many of these pictures have teenagers in them who are now grandparents. What a memory filled hour I had. One of the first things that strikes me is how many of these pictures have dad in them and how much my dad smiled. These aren’t look at the camera, count to three and smile pictures. A lot of them are candid, living life pictures (that dad just happens to be in) and he is always smiling. The other thing that stands out is how many people dad has touched in his life. There are pictures of so many, many people who have been impacted by my parents. Al and Sue, Inga and Rick, Aaron, Andrew, Debbie and Wayne, Joel, Scott, Brent, David, Miriam, basketball girls galore (over 20 years worth of bb girls). The list goes on and on. Pictures of family who I never really knew due to the miles and miles separating Ohio and Alaska. Yet, thru these pictures, you can see the bond that dad shares with his siblings. The way they all hold their heads when they’re laughing and that’s another thing you’ll see. When they’re all together, they’re laughing, especially dad and his brother. To be honest, growing up I didn’t hear about dad’s siblings too much. To be fair, I’m not sure there are too many kids who sit around asking questions about their parent’s siblings. I know I certainly didn’t and as dad has slipped into dementia, the stories that get told often leave me thinking…that can’t be right. Dementia can ‘jumble’ things and dad is no exception. I loved looking at the pictures of happier, healthier times. I was also struck again with how big my dad was. Sometimes it’s easy to forget in this new ‘norm’ that it wasn’t too long ago that dad was a big man, doing big things. It’s easy to loose site of the years and years of ‘better times’ gone before, especially when you’re in the trenches of watching his life ‘ebb away’. His life. I think that’s what struck me the deepest during this one hour journey down memory lane. I was viewing dad’s life. And he lived it well. And he is letting go of it well too. Dad’s hard on himself, which I find sad because he lived a good life which can be measured by the fruit that I saw through those pictures today. I recently had someone say this to me. “I can probably name on one hand the number of really good, good men I’ve met in my lifetime. Your dad was one of them.” Without a doubt, dad would say, that’s a testament to my Lord and Savior, Jesus Christ. I would add, that’s also a testament to you, dad. You allowed yourself to be the hands and feet of Jesus and you’ve done it well. I think it would be an almost impossible task to name all those people who were impacted by my dad. Just one hour of looking through pictures was enough to assure me of that. So many, many people he gave up his time, energy and resources to help. If someone were meeting him today, for the very first time, I think it might be hard for them to believe that dad was once a large man. A large man with a huge smile and an even larger heart, who loved nothing better than to be able to help people.
It’s been two months since dad had his stroke. I realize there are updates that need to be made, one of those being that we do think it was a stroke. We had conflicting doctor views on this but I think, in the end, it was decided that’s what it was. Time seems to be bearing that out. Dad has regained some of what he lost during those early days in February. He is NOT yet walking but he does use his legs to stand, for very brief periods, and he moves his wheelchair by ‘shuffling’ his feet. His left arm has much more movement but is still very weak. His left hand moves but he has to help it with his right hand usually. Quite awhile ago, his left hand swelled up. It has stayed swollen, to varying degrees, since that time. A week or two later, his left foot and ankle followed suit. Today is the first day in weeks and weeks where there isn’t noticeable swelling. At times, the swelling is so bad that his skin is shiny from being so tight. Of course, during those times, he can not use it at all. A few weeks ago, during the nurses weekly visit, his heart rate was 133 beats per minute. With the swelling on his left side, she felt this seemed to indicate congestive heart failure. His heart has done better in these following weeks checkups. Congestive heart failure could be something that stays on the radar, however. Overall, dad is MUCH slower. Some days, it takes many, many minutes for him to follow through on a thought he has. Example, he decides to brush his teeth. When he has this thought, he’s sitting in the living room watching TV. By the time he’s actually finished the whole process, half an hour has gone by. It’s something that would take a healthy person about three minutes. There are days where he just sleeps and nights when he doesn’t at all, and then, there are days and nights when all he does is sleep or at least lay in his bed and rest because he’s so tired. His mind is usually pretty good. He gets confused about things at times. He asks the same questions over and over sometimes. He focuses in on something, like cleaning the floor, and just can’t ‘let it go’. Sometimes he fights with his bed for hours, trying to get comfortable, but overall, although his mind is slow it’s decent for someone with dementia. He’s much quieter than he use to be. Sometimes, he’ll just sit and look at the floor, for a very long time. He has days where he’s very weak and needs help with balance and up and down movements, like standing up and sitting down. Other days, he’s pretty independent. He can get himself to the bathroom and into bed most of the time. I’ve noticed there are days where he’s uninterested in everything and can’t even follow a Heat’s basketball game. He loves Lebron James! Other days, he tracks a documentary about a basketball coach with almost no trouble. Often, when he’s tired especially, his speech is slurred. Some days, this is pretty pronounced. Other days, you don’t notice it. Things have stabilized a lot in this last month. I think it’s safe to say that it would take very little to be right back in crisis mode with dad but that these past few weeks have been crisis free and surprisingly stable. It was something we weren’t sure we’d ever see again in February. Dad told me today that he’s going to walk again. As the sun gets hotter and shines longer, optimism comes easier and I can believe it really may be. He shocked us all last week when he filled the bathtub and got in and washed completely by himself. He needed help to get back out but even six weeks ago, what he did would have been utterly impossible! That dad is an ultimate warrior is indisputable. The only one who doesn’t see him that way is himself. He still says he’s a wimp. How completely and utterly ridiculous! He’s the strongest, toughest warrior many of us will ever know. I think I’ll be in shock when dad finally does go to his eternal home. He’s been so close so many times and pulled through over and over, I’m beginning to think he’ll be here forever. I know for a fact, he’s hoping that’s not the case, some days, more than others. Until that time comes, I’ll continue to be so grateful for each good day and so thankful I’m able to help with his care. ——————————————————————————————————————————————————————————————————————————————————————————————————————————————————————————————————————————————————————-
Today is Valentine’s Day. The past few weeks have gone down in a blur. I’m not even going to try to give dates, because I really have no idea of time-frames, other than it began between two and three weeks ago.
Before I bring you up to date on the present, I’ll say that I’ve not written in a long time, mostly because, Dad had been pretty stable. He was fairly independent. He could dress himself, walk, eat, even be left alone for short periods of time if someone was close enough to check on him occasionally. He didn’t like mom being gone to run errands and such but knew it was good for her to get out and was comfortable with me being just upstairs. He could still make a sandwich and get a drink for himself. Things were stable like this from the time of their move into their new apartment, in the walkout basement of our home, until very recently. They moved in October of 2012.
Throughout the summer of 2012, Dad was able to get outside in their yard and ‘putter’. He’s been unable to do any actual gardening, farming or strenuous work for quite some time now but he could still pull weeds…which sometimes was hard as he couldn’t remember what was what and would end up pulling things that should have stayed but he enjoyed being outside and could find things to do.
That’s the past, fast forward to the present. It began by Dad saying he didn’t feel ‘right’ but couldn’t really tell us why. Everything seemed fine that we could check ourselves and nothing seemed ‘out of the ordinary’ enough to tell someone, this _____ is happening. Over a two day period, he kept complaining of this not feeling ‘right’ and he, in perceptively really, started not using his left arm and leg. This went on like this for a couple days and then Dad began experiencing horrific leg contractions. When I say horrific, that’s what I mean. So. much. pain. Given Dad’s disease, we can’t just give him the ‘traditional’ prescription pain medication. Also, given his disease, the hospital is the absolutely last place in the world you want him to have to go.
Over a several day period of time, dad took probably five or six pretty dramatic falls. We weren’t prepared for how quickly dad lost the ability to use his legs and he’d completely forget that they didn’t work. Eventually, they stopped working all together. After much consultation with, and a visit from, the home health nurse who’d begun to come once a week a couple months before, we determined he’d had a stroke.
The contractions in his leg kept getting worse and worse and it was apparent that no one could survive that type of pain for any extended period of time. He was working on several days of no relief by this point. During the night one night, BOTH legs started doing that terrible contracting. That was pretty much the straw that broke the camels back. We knew that the benefits of taking him to the hospital, regardless the outcome, outweighed the benefits of keeping him home, at that point. It was a really hard decision to make. LBD patients and hospitals do NOT make good relationships.
We transported him to Elmendorf Air Force Base ER. Elmendorf is where dad’s records are from his double knee replacement surgery, and the ensuing complications which almost took his life back in 2007 or ’08, I can’t remember which at the moment. We were expecting them to keep him, at least overnight for observation. In the end, after a good ‘going over’ by a good doctor who really spent time with him, they sent him home. They felt it probably hadn’t been a stroke but a worsening of Dad’s Lewy Body. A brain CT seemed to confirm that. With those findings it was concluded there really wasn’t any benefit to keeping him and a lot of risk involved if they did. The most helpful development from that ER visit, in my opinion, was the prescription given for his severe muscle spasms/contractions. This has made all the difference in being able to get him, and keep him, relatively comfortable.
At this writing, Dad isn’t able to care for himself. His left arm is completely without any ability to use it. He can not walk. At times, his legs hold his weight. Usually, they really don’t. If you help him stand to his feet, he can ‘sort of’ stand with MUCH support from someone. He does still feed himself, most of the time. It takes him a very long time to eat. We’ve noticed there are times where it’s difficult to swallow water. Mentally, he is often ‘not ‘present’. He has a lot more delusions than before. Often his delusions work there way into his conversations for long periods of the day. He’s often very confused and needs directing when performing tasks such as brushing teeth or moving from bed to wheel chair.
One of the small mercies in this situation is how truly, truly funny dementia ‘moments’ can be. Mom and I have laughed until we’re doubled over and crying from some of the things that are said or happen. Another small mercy is dad’s laugh. He really hasn’t laughed a lot these last few years, like a head thrown back, belly laugh. Whether it’s an effect of the medicine…likely, or not, it’s such a ‘stressful moments’ reliever! Dad’s sense of humor remains intact! He jokingly says it’s the only sense he has.
We seem to have found some stability in this new norm. Dad seems to have plateaued here. We’ve gotten a hospital bed with trapeze and some other medical equipment which is necessary to successfully care for him at home. We have someone who comes every other night to spend the night with dad so that mom can get as much uninterrupted sleep as possible. On the other nights, I am available if extra help is needed. Things are slowly falling into a new routine.
No one can say what the future looks like. Will any of dad’s abilities come back? Will he take another dive and lose more than he’s already lost? Time will tell. For now, we’re relieved to have better tools with which to meet Dad’s new needs. It’s been a difficult, difficult couple of weeks. Hopefully, especially mom but both of us really, will begin to get a bit more sleep and things stabilize even further.
Monday morning, on my way to stoke my parent’s stove, I came around the corner and there was dad. He was fixing potholes in his driveway. I drove away chuckling. He looked so much like a gnome. It was a cool, misty morning and the scene could have been a set on a movie. He grumbled a bit when I asked him if I could take his picture but he straightened up as tall as he could and gave me a cross between a grimace and a smile. I’m so glad I have this picture.
There are happy milestones and sad milestones, some you wait impatiently for and some you hope and pray you never experience. Dad is experiencing many of the latter and by association we are too. Today I was reminded of this yet again. When my cell phone rang this afternoon, I didn’t expect it to be dad. He very rarely uses the phone anymore. Unfortunately, when he does, he calls my cell. I say unfortunately because I get really lousy reception when I’m home and this afternoon I was at home. When he called, I could hear him but he couldn’t hear me very well. This is frustrating under the best of circumstances but today it was particularly so. I could hear the urgency in his voice. The more I said, ‘Dad, I can hear you’ and heard him respond, “hello, Sarah?” the more the urgency escalated. I thought I could hear tears too. Growing up I probably heard or saw dad cry, at most, half a dozen times, so it’s still a bit startling when this happens. By the time we had a good connection, I was sure he was crying. After spending some time talking with him, I was both saddened and relieved at the reason for his call. My mom’s birthday is coming up. He remembered she was having one but couldn’t remember when it was. He was afraid he’d missed it. Did you know you don’t just feel pain but you can hear it too? I heard it today in his voice. The pain of thinking he might have missed such an important thing to him. The pain of realizing he didn’t know if he had. The pain of worry he’d forget between now and when it actually happens. The pain of wanting so badly to do something special for her but not knowing how to accomplish that anymore. Dad has always loved my mom. Really, really loved my mom. He thinks she hung the moon. He’s incredibly grateful to her and for her. He’d be completely lost without her and he still does know that. When he called today, I knew this was all part of the ‘panic’ I could hear. He thought he’d missed her special day and he knows he may not have another opportunity to celebrate it with her.
“Dad, you’re good, you’ve got time. Do you want me to help you remember?”
“I have time? Yes, help me remember.”
I could feel his relief through the phone. It never crossed my mind that he would need help remembering or help implementing a plan to make her day special. This is one milestone I could have done without but it’s here so I’ll be thankful for the call that alerted me to it.
I’m doing a bit of restructuring with this blog. I’ve actually started a new one and will only use this one for what it has become, a place to talk about dad’s journey and update those who like to check in periodically. As winter closes in and mom and dad move into their new place, I am sure things will be challenging for dad, and us, at times. It really is therapeutic for me to ‘write it out’ and I’ve been encouraged by peoples thoughts and prayers, especially for dad, but for us as family too. My dad is a super special man and it’s my desire to honor him through this blog. I chose to change the blog look also. I felt these trees represented my dad’s depth, strength and wisdom.
It’s been a while since I’ve written anything on this blog. I’ve written dozens of posts in my head but they just don’t ever seem to make it onto the blog! A few days ago, I spent a bit of the afternoon with my dad. It was a beautiful, end of summer day. As I sat on a rock outside his house, soaking in the heat of the sun, I quietly watched him. So many, many emotions flood through me when I spend any amount of time with dad. As a girl growing up, dad was very tall and slender with broad shoulders. I always thought of him as a big man. He was as strong as an ox and in my view there wasn’t a thing in the world he couldn’t do. I don’t remember him being very talkative, not too quiet, but he wasn’t chatty. He had, and still has, although not nearly as often, the zaniest sense of humor! Somehow, he always managed to make me believe I was his favorite. I know siblings of mine felt that way also, so he must have done a good job of making us feel loved. For a long time, my universe centered around my dad. He was larger than life to me and I loved him more than anyone in the world.
The years have not been kind to dad. As I watched him, I marveled at how much a body can change. Dad’s face is deeply etched with lines. Many are from hours and hours of working outside and some are from all the laughter he once was filled with but most are from the years of pain and nights on end of no sleep. He sits in the sun and picks at weeds with a tool he’s fashioned, at one time or another, for just such a task. Dad was a problem solver. He still tries to be a problem solver but for the first time in my life, I’m witnessing my dad not succeed. Too many things are just too much for him anymore. Dad was very handy and could invent most anything he needed to fix a problem or make a task go better. Usually he’d fashion his inventions out of materials he had laying around. Money was always tight but he never seemed to be concerned about that. Money never had a grip on him. If he had it, he’d just as soon pass it on to someone he thought had more of a need than he did. If he didn’t have it, he’d go back to the drawing board and invent whatever it was he needed, out of whatever it was he had laying around.
He sits now and watches as I try to prop up mom’s apple tree, which has so many apples on one limb it’s bending in half. That he sits and watches while I do this is a deep jolt inside me. Once upon a time, there would have been no way he’d sit while I problem solved or wrestled with tree branches. At the oddest moments, the pain can be searing. Why and how did it come to this, I wonder for the umpteenth time.
When he stands, his once 6’2″, straight as an arrow, ex-Marine Corp body is stooped and ‘S’ shaped. He is often shorter than I am. At times, he can force himself ‘upright’ and reach the height of 5’7ish”. Today, 5’7″ is impossible. He sits and soaks in the August sun and comments on how fine Alaska is in August. “Can’t be beat.” “So glad we came here.” “Alaska’s a good land”. This day, I can almost see the cords that bind him to this land he loves so much.
I’ve been with dad through many of his most wretched physical trials. I’ve seen suffering deeper than I ever knew existed. I’ve experienced a crisis of my faith, my belief system, in part, because of watching him go through this terrible suffering and I’ve largely come out the other side of this crisis, in part, by watching dad’s own faith. I’ve never, even in his darkest, most horrific times, heard dad blame God, beg Him to make it stop, demand that He fix it. And I know it’s not that he’s given up faith in God’s ability. I know he has questions, I’ve heard him voice them but at the end of the day dad’s thankful, grateful, hopeful and he comes to God in gratitude. I’ve stood with dad in the darkest, darkest times, harboring vast amounts of anger at God and listened as Dad’s thanked Him: for His presence, His Peace, His availability, His strength, His Grace. And I’ve often not understood a word.
But watching dad navigate the desolation of his health, I’ve learned a few things. It’s not God’s fault. It’s not Dad’s fault. Bad things happen to good people and, yes, that’s very hard to accept sometimes. As I’ve allowed my heart to open to the understanding that God isn’t a ‘sugar daddy’ whose only role is to dispense the good things I like, want, need or hope for, I’ve begun to see that though I DO NOT understand why dad is suffering…God hasn’t ordered it, He doesn’t rejoice in it and He hasn’t abandoned him or me.
Proof, you say. Well, one undeniable proof is Dad’s still soldiering on. He’s able to be plunged back into intense suffering over and over and over and over and over. You argue, that’s not proof because he has no choice. Yes, he does. There are many who have chosen to end it all, to the great sorrow of family and friends who were denied their chance to say goodbye or even make wrong things right. Dad keeps keeping on because of his faith. Because he believes in Gods’ presence, feels His peace, knows first hand He’s available, knows He’s his strength, knows His Grace.
As I sit and watch dad on this glorious August afternoon, I can’t help but wonder how much longer dad has to endure this suffering. I use to get all twisted up inside thinking about dad’s death and feel like I just would not be able to handle it. Funny how perspectives change. I can honestly say from walking through this journey with dad, there are things worse than death. I’ll miss him dreadfully but that won’t be ‘new’. I miss him now. I am convinced that dad will be trading his sickness and pain for joy, health and peace and for that, I can’t wait.
He stands up and says, I love being with you, Sarah, but I think I’m going to try to sleep for a bit. When I hug him there is no recognition of ‘hugging my dad’. It’s like hugging someone else’s body and calling it my dad’s. I walk away from him marveling at his strength, his endurance, his perseverance, his faith. If I can cultivate half of what dad has, I’ll be so blessed. I am so blessed already, so fortunate, to have had this man to love me and guide me throughout my life. He’s the strongest man I’ve ever known.