Dad’s, of course, in a hard place…has been for years. However, lately it seems ‘harder’ yet if you asked me to give you the reasons, I’m sure I couldn’t. Here are a few things I’ve noticed. He seems more detached. He sleeps more. His pain, if possible, is greater especially in regards to his digestive and elimination tracks. He’s less able to articulate his needs or the sensations he’s experiencing. He can tell you he hurts, he can’t necessarily tell you where or what kind of pain it is. He doesn’t follow thoughts through as much. He’s disinterested in the things he use to be interested in. He’s much more emotional. The past seems more vivid than the present much of the time. He’s more fragile than ever. He’s less steady when he maneuvers himself around. He’s a lot weaker overall. In general, the decline has been steeper lately than in the past few months. Whether this is cyclical or a new phase he’s entered is anybody’s guess. Often in the past, he’s taken steep, fast dives and plateaued. Sometimes, he’ll go on to regain some of the ground he lost. Not lots but some. To me, as an observer for quite some time now, I don’t think he’ll be gaining any back. Maybe he’ll not sleep as much as he has lately. That is one cycle I fully expect to remain until the end. Overall, I’d say he’s in a time of losing territory, not a crisis, just steadily losing ground. How long this will go on and how much ground he’ll lose, that’s a question only time will tell. Mom and Dad celebrate their 50th wedding anniversary next month. 50 years! What an accomplishment. What a heritage I’ve been given! My prayer is that this decline is over long before then and they (we) are able to celebrate them the way we’d like to…as much as this illness will ever allow. That is something we’re all looking forward to, except, dad. He, of course, is usually completely unaware of dates and times. What a wretched disease!
Watching your dad slip away very, very slowly through a process involving great suffering is beyond hard. I think I’m getting toughened though. Things that would have, at one time, sent me into deep grief I now handle fairly easily. Things I just wouldn’t have handled at all, I now do, pretty effortlessly actually. Mom stated the other day, “I’m numb”. Yea, I understand that. I sort of am too. Dad’s ride is an extreme roller coaster. Ups and downs, ups and downs all within 24 hours. We’ve seen it where he’s really, really suffering, very confused, not able to self direct at all or care for any of his own needs in one portion of the day, only to have him be 100% improved 6-8 hours later. We’ve seen medicine work like a charm for his leg and body spasms and then, seemly, seen the same medicine make them way worse, all within 24 hours. Those spasms/contractions are what cause dad his most intense suffering. The pain, at times, is utterly indescribable. We’ve taken pictures of his legs totally black and blue with bruising, looking like someone took a baseball bat to him, only of course, nobody did. It is all from his muscles spasming and contracting. His muscles go rock hard and clamp down repeatedly, tossing his body around like a rag doll. The other source of his intense suffering is some form of phantom type pain in his buttock. He’s often convinced his backside is one big piece of raw wound. The pain can drive him nuts at times. Sometimes, he is sure if we’d just take him somewhere, they’d be able to fix it. That there is no wound back there just doesn’t make sense to the amount of pain he has. I often wonder if somewhere in his brain it’s remembering the days of his bed sore. The one that almost killed him back in 2007. Dad continues to go through cycles of sleep/no sleep. Many times he has gone 4/5 days and nights with no more than 15-20 minutes during a 12 hour period, to sleeping all day and fairly well through the night. The sleeplessness continues to aggravate his confusion, of course. When he’s sleep deprived, he can really lose all touch with reality. I continue to feel that dad is remarkably ‘with it’ for someone with dementia. Yes, there are days where it’s crazy. One day he asked me if I’d ever met my husband’s other wives. It was such a startling moment that I paused and just looked at him, he was looking at me and could tell something wasn’t correct in what he said. On a good day, I could have jokingly said, well, that explains a lot, and he would have gotten the joke and we’d have laughed and moved on. On a bad day, he’s unaware that he said something that didn’t make a lick of sense. Sometimes a whole day goes by where everything he says is spot on, other times, you can at least follow his logic, if it is a bit confused. Then there are the times he can talk pretty crazy and it continues to be pretty funny. Honestly, yes, it’s heartbreaking to hear your dad talk craziness but, keeping it real here, it’s also funny especially when he’s laughing and laughing about whatever it is he’s trying to tell you, that doesn’t make a lick of sense to you, but he sure thinks is hysterical. And then there are the super funny times when he’s watching TV. He loves commercials, which is a big switch from reality anyway. There are commercials on today that make your eyebrows meet your hairline. Dad’s commentary on commercials is usually very, very funny. The things that he ‘gets’ from them makes you shake your head and wonder…how in the world? The things he believes to be real are equally mind blowing. It is during these times where I become most acutely aware of just how deep dad is into this brain disease. My dad’s a really smart guy. The guy watching these commercials, not so much. He is, however, entirely lovable. I’ve read about patients with dementia who become sneaky or mean or just hostile even. Dad is none of those, ever. Occasionally, he’s picky and gripes but, interestingly enough, he reserves his worse behavior for mom and he hasn’t yet lost the knowledge of how much he loves her. When she’s gone, his constant question becomes, “where’s your mom? When will she be back?” So, he keeps plodding through this illness and we keep trudging along beside him. Winter is on it’s way here. You can feel the crispness in the air. Mom’s garden, which she ingeniously planted in cloth bags out on her patio, is looking frost touched. Dad continues to talk about how smart she is and how she really is the farmer, not him. He’s forgotten he use to farm the field at the bottom of the hill. Yet, we haven’t and never will.
Over the past few weeks, dad’s leg cramps have slowly been returning. After getting those horrible things under control after our ER visit in February, I was hoping they were gone for good. No such luck. Slowly, they’ve been making themselves known. One here, two there until they all came marching back again. Two nights ago, they showed up in dad’s lower back and he spent a lot of long, miserable hours in tears from the pain of them. Mom has become highly educated on many natural remedies that help with RLS and cramping. Nothing she had used successfully in the past was working anymore. Because the leg cramps had been slowly intruding, mom had started the long process of getting in touch with dad’s VA doctor. Here where we live, there is one doctor for 1700 VA patients…I won’t even get started on that statement. My blog post would suddenly be hijacked by a very ugly rant, which isn’t the purpose of this post…It only pertains to this in that it takes a long time to get information to and a response back from dad’s doctor. Often, things are lost in translation and you don’t find that out until you’re in desperate need of new medication or an appointment, which I am not blaming on dad’s doctor. She’s very good and one of the only doctors, if not the only doctor, who actually reads his charts before seeing him or having a phone appointment about him. That is worth it’s weight in gold as anyone with a chronic illness knows. So, back to the fact that mom had been working at getting in touch with dad’s doctor quite awhile previous to these last horrible bouts of cramps. Thankfully, she had a phone appointment scheduled for that very day. Dad is now on another high potency muscle relaxant, along with his baclofin from the first ER visit. Things have calmed down dramatically. The result of all this cramping seems to be that, at least for right now, dad’s left leg is not working again. He can’t lift it off the ground and it, once again, doesn’t hold his weight. When he moves it, it causes pain up in his lower back. That’s a bummer. He was doing so much better with his mobility and getting the use of his legs back. He’s only walked once since February and that was the other day, so there is some question in our minds as to whether that little walk he took with his walker contributed to this new cramping crisis. Dad has severe degenerative disc disease and in my mind at least, it’s possible that his lower back is so damaged that it can’t handle having the legs ‘walk’ anymore. The cramping and pain that were produced in the lower back certainly makes you want to err on the side of caution, at any rate. At this point, it’s a none issue since dad can’t use his left leg. We shall see how things go from here. Hopefully, contrary to dad’s repeated history, this medication will continue to be effective in controlling the spasms and cramps and he will be able to continue all three medications he’s now on. Often, we start out with great success, only to have it go bad weeks or months into using them. That seems to be the story of dad’s life in regards to medications. Whether that’s common in LBD patients, I don’t know. I’d be interested in finding out. Mentally, dad continues to be relatively stable but he does experience delusions and will repeat the same conversation over and over. When he gets onto a subject, whether it makes sense or not, he’ll stay on that topic for quite some time. Often there is a lot of confusion in his mind regarding real life happenings today and things he’s seen on television or remembers from his past. Many times past and present merge into one big confusing conversation and, at times, the things he comes up with are pretty humorous . He’s still got a great sense of humor although some of it is unintentional now, and when you crack up because you just can’t help it, he takes it in stride realizing he said something that didn’t make any sense but knowing it must have been funny. There are times where he’s so earnest and serious about something that is just soooo far out there, you don’t dare laugh. Dementia is the weirdest but it does come with bonuses because he can be going through agony and be more than miserable and get a break for an hour or two and then tell you his legs have been quiet for days and he’s been having a good week. That is a real blessing in my book. To know that he doesn’t remember and will forget this agony promptly is one thing I can be thankful for.
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.