One Last Post

I want to thank everyone who has read about our journey with FTD. It did not end the way we expected, but I can’t deny that it was better this way. It is so hard to check in on my support groups and see the suffering that remains there. I have met so many amazing people from around the world – so many people who give of themselves and support each other, people I will never forget.

As I mentioned previously, I have begun a new blog. I’m not sure exactly what it will be about, but I’m excited to start. I’d be happy to have you join me on this next adventure called, “the rest of my life,” over at, Coffee Colored Roses.

Thank you again for reading and God bless.

 

Going Forward

It’ll be two weeks on Monday since Keith has been gone. The funeral was absolutely lovely. I couldn’t have asked for it to be any more than it was. I felt surrounded by friends and family, the homily – given by a priest who we’ve known for 20 years and who baptized Keith – was perfect, and the music was amazing. There’s something about a funeral Mass that feels, to me, like we are sending the person off and they are at peace.

Gradually, all the family left. Our eldest daughter was the last to leave, having stayed until Saturday. It was such a blessing having her here. Once she left, however, it felt like things got real. We had to find the new normal in earnest – no more feeling like this is just some extended holiday. I had gone back to work a few days after the funeral – I just knew I needed to work and get back to routine – but now life really had to start again and, really, start anew.

I have found myself missing the social norms and customs of the past. It feels like I should be doing something to designate my new status of “widow,” but nobody does that anymore. You don’t see women dressing in all black, there’s no designated time to stay out of public eye, no social rules that tell you what you are supposed to do now or for how long. I wear a bandana over my hair all the time. (It’s a long story to explain as I have multiple reasons, but it’s something I’ve done for many years now.) I opted to wear black scarves for the time being. How long? I don’t know. I guess I’ll figure it out as I go along. I also went to have my wedding ring resized for my right hand. Its been 27 years, seven children, and about 100 pounds since I first put that ring on so it required a jeweler’s assistance to cut it off and make it a wee bit bigger. I’m not sure anyone will notice – I’m not sure most people are even aware of that custom – but it’s meaningful to me. It didn’t feel right to have it on my left hand anymore, but it also didn’t feel right to be without it. I felt like, after putting up with me for 27 years, it was the best way to respect Keith’s memory.

I find myself in a strange space in time. Our 18 year old daughter has been struggling a lot with all the “adult” questions – What should I do with my life? Where should I live? What will my future be like? The other day, after talking through some things with her, it occurred to me, we’re kind of in the same boat. It’s different, of course, because she is truly just starting her life, but, in a way, so am I. For many years now, I felt very strongly that my purpose in life was to take care of Keith. Now that I am no longer doing that, what am I supposed to do now? What’s next?

Throughout my life I have learned that we can make all kinds of plans, have all kinds of visions for our life, but in a moment, it can all change and, suddenly, nothing is what we thought it was going to be. Sure, it’s good to have a scaffold and some ideas, but, if we cling too tightly to them, we’re going to end up really frustrated when things we have no control over impact our lives and create changes we had no way of anticipating. I’ve gotten really good at learning to wait and see what God puts in front of me. It’s not always easy – it can be down right maddening – to wait, always wondering where our lives are going and what we are supposed to be doing, but I have found that it’s always worth it because God always has a plan that it is infinitely better than anything I could have come up with. I feel very fortunate and blessed that I am in a place where I can do that right now. Initially, I didn’t think the kids were going to be getting very much from social security for their survivor benefits and, despite my best attempts not to, I was stressing a little about how we were going to make ends meet. I knew God wouldn’t have brought us to this point without a plan for taking us forward, but I didn’t know what it was and I was trying to brainstorm all the possibilities available to me. Now though, I know we are going to be ok. We will need to make a few adjustments to the budget, but I know the bills will get paid, and that was a relief I could feel on a physical level.

So, we have bought some time. I can continue to work at the school with all the amazing people who have absolutely showered us with support and love, I can still be here for the kids, and I don’t have to make any major changes to our lives beyond what we are already trying to adjust to emotionally. And life goes on. Spring is teasing us with warm temperatures and melting snow, today is the deadline to sign the 13 year old up for baseball, next weekend is the 11 year old’s theater recital. As we embark on our year of “Firsts,” we will go forward. We will laugh, and inevitably cry, imagining what Keith would have said or done and how much he would have liked the chocolate birthday cake or the Christmas cookies, and we’ll wish he was here while still knowing that he is someplace far better. I have absolute certainty that God will show me what my next steps are when the time is right (something I will probably need to remind myself of daily) but until then, I will keep moving forward, one day at a time.

Until next time . . . . this is life after dementia.

 

Gathering a Life

How do you gather a life? How do you summarize 62 years of living in a few paragraphs, a couple of photo boards, a slide show?

This past week has been busy. Tuesday was spent making lots of phone calls. Wednesday we drove back home from Wisconsin – with more phone calls. Thursday we met with the funeral home, started sorting pictures, solidifying all the arrangements and plans. Friday I went through his clothes. Why so soon? I don’t know. I guess I just needed to. I wanted to have everything organized so the kids could find things they would like – gifts they’d given him over the years, favorite t-shirts and hats. Saturday family began to arrive. I know I have no obligation to entertain people, but I am so blessed with so many wonderful friends who have brought food, and my phenomenal kids who have helped and been here all week through everything, it’s something I want to do. It is comforting to me to have people around.

It’s been so great having the kids here all week, even if it has resulted in a Twilight Zone sort of feel. As one day rolls into another, we have laughed, cried, drank, remembered. Well wishers call and bring us food. The day of the funeral looms ahead of us, as do the days when we will have to return to our routines. It’s impossible to know what that will feel like. It still feels so surreal.

We have coped in different ways. Of our two youngest kids, one has been distance learning this week, not wanting to go into school and talk to people or be asked all the dreaded questions, but our other has wanted to be in school and returned to class immediately on Thursday. I have told them that there is no right or wrong to grieving. You have to do what works for you. I also warned them of the inevitable roller coaster they will ride – one minute you’re fine, the next minute you aren’t; you might be good for many days or weeks, and then all of a sudden a memory or event triggers something and you’re a mess all over again. I fully expect to break down the first time I do our regular grocery shopping and don’t have to buy Keith’s weekly allotment of chocolate, peanut butter cups, and doughnuts.

Our dog has been sad too. I walked in the bedroom one day to see her laying on Keith’s bed, surrounded by the t-shirts and sweatshirts I’d been sorting. I gave her some pets, but it’s so heartbreaking not being able to explain or make her understand.

I try to stay busy, but there’s only so much to do. I don’t want to feel sad, and I’m so tired of crying at random moments throughout the day. I want to just skip ahead to later next week when we can be done with everything, but that brings it’s own set of feelings, and none of it can be avoided. There’s a movie we like, “We Are Marshall,” based on a true story of when a plane carrying virtually the entire football team for Marshall University crashed in 1970, killing all on board. One of the characters, a father of one of the players, spends the movie lashing out at people and misplacing his grief all over the place. Finally, at the end, he realizes what he’s been doing and, in talking to his son’s grieving fiancée, says, “Grief is messy.” Even though some may feel like it’s a cliché sort of phrase, I can’t think of any better way to say it . . . at least not without profanity. Somehow though, we wade through and find our way to some kind of new normal.

I’m not sure where my blog will go from here. I may eventually end up starting a new one, but this one will always stay here, and it’s not a decision I need to make now. I don’t even know where my life is going to go, never mind my blog! I intend to keep writing though – my godmother made me promise! For now, raise a glass and toast with us – to Keith! To family! To life and living it to the fullest so that, when our time comes, someone will have to agonize over what to include in those paragraphs and picture boards.

Till next time . . . this is life after dementia.

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Saved

Keith was saved today. He was saved from a long, humiliating, decline into FTD. He was saved from nursing homes, diapers, the heartbreaking confusion that comes with an inability to understand his condition and all the things that have come with it. Keith was saved from what would have been a long, painful recovery, a recovery that would have likely left him with much more advanced dementia and so much misery. He was saved from COPD and his worsening breathing issues that made it hard for him to do any physical activity without getting out of breath. Keith was saved from the constant back aches that have plagued him for the last 2 years. In so many ways, he was saved.

Today, while drinking heavily at my mother’s funeral, my kids and I agreed that we gave Keith the very best last year we could have, without even realizing it. In Dec. 2019, they took him to his very first NFL game – his beloved Packers playing the Vikings and beating them on their home field. In Jan., 2020, right before the shut down, he and I went to Hawaii. He never thought he would actually get to go, but he did. In June, he got to see our daughter get married and dance with her. I “spoiled” him with all the chocolate donuts and candy he desired, as well as mocha drinks from Caribou, and chocolate shakes from McDonalds anytime he asked, and I’m so glad I did. These last two weeks, I wanted so badly to bring him one of his special concoctions from Caribou, but he had dietary restrictions part of the time he was hospitalized, and even without that, couldn’t hardly eat anything most of the time. I wish I would have anyway.

I met Keith when I was 16 and a senior in high school. There was rarely a day when we were not together. Even now, 32 years later, our lives have revolved around each other. As much as he drove me crazy (and I’m sure the feeling was mutual!) we were always with each other and everything we did, was done with the other in mind. Two thirds of my life has been spent with Keith. I don’t know how to picture anything without him.

People always say, “Make sure you’re getting enough sleep!” Through almost anything, sleep was the one thing I didn’t have any trouble with. No matter what was going on, I would follow my bedtime routine and drift off without issues. But not tonight. Or today. Or whatever. I went to bed, slept a few hours, but then woke up and laid there for two. My heart and brain are aching to sleep, just so I can forget for a while. Forget this surreal nightmare that just doesn’t seem real yet, and yet I know is reality. So I thought I’d try getting some of the thoughts that are buzzing around my head out onto the keyboard.

Over the last 32 years, I have probably cried more tears over that man than I should have. I’ve never sugar coated the fact that our lives were difficult and there has been a lot of pain. But nothing we ever dealt with equals the tears I have cried the last two days. Even though I prayed that he be spared the worst things FTD has to offer, even though I hoped, for his sake, that he not have to suffer because it just seemed so cruel and unfair, this isn’t what I wanted it to be like either. Because, along with the difficult and painful times, there was joy. To the end, Keith could always come up with something witty to say. He was funny, often inappropriate, and was never at a loss for some ridiculous comment that made us laugh. Overall, our life was good. We have beautiful children, all of whom carry various parts of Keith in their personalities and looks. We bought a house 3 years ago and have come a long, long way from the days of digging change out of furniture to get gas and cigarettes for the week!

There is so much I could say, so much I wish I could convey and express. We had taken to joking that Keith was the Immortal Man. Someone recently suggested that the doctors should check him for cat DNA because he seemed to really have 9 lives. Through so many scares and health crisis, he just seemed to keep bouncing back. And now, he’s been taken out by a tiny, useless appendage on the intestines, whose only purpose seems to be to cause untimely demise. Yes, his other health issues played a part, but it was the ruptured appendix that started it all.

I’m going to try again to sleep. Not sure how it’s going to work, but feel like I have to try. I guess I’ll have to come up with a new signature for my blog posts. I’m not even sure what I’m going to write about going forward. I’m sure I’ll find something! Even though this blog has been about our FTD journey, Keith was much more than his dementia. He was an unforgettable character who has left us more good than bad. It had been a long time since we had a typical husband/wife relationship, but in the end, what matters is that our lives were, for better or for worse, truly intertwined. I will miss you, my husband. I love you, and always will.

Until next time . . . this isn’t just about dementia.

 

Here’s To Roz!

Hello, and welcome to my blog! For my regular readers, instead of my regular content, I am paying tribute to my mother, Rosella Mae Silber, who passed away this past week. She was well loved and will be greatly missed. My sister, Michele, and I wrote up an obituary, which I present to you here:

Rosella Mae Silber

Born on June 5, 1935, to Rose and Leo Mallak, in Athens, WI, Rosella, found peace February 14, 2021. “Roz,” grew up the youngest of 10 children on the family dairy farm. No stranger to hard work, she moved to Milwaukee at the age of 17 and became a nanny and housekeeper for several children. It was here that she met Stephen “Steve” Silber. The two married on January 18, 1959, and had 5 children.

Roz was ever the hostess. She held large dinner parties, always had a spare bedroom for out of town company, and together with Steve, ran several successful tavern businesses throughout Milwaukee, including the Melody Bar, in Hales Corners. Roz loved music, dancing to her favorite tunes, and hosting bands from all over the country. They also traveled extensively, filling many photo albums with memories from all over the world.

Roz was greatly loved by many. She is survived by her husband, Steve Silber, children Mark (Carolyn) Silber, Mike (Michele) Silber, Michele (David) George, Steve (Kim) Silber, Jennifer (Keith) Silverman, many grandchildren and great-grandchildren, and sisters Marie and Barbara.

Roz is preceded in death by her parents and brothers Lawrence, Clarence, Leonard, Harold, Joseph, Raymond, and Frank.

Private service will be held with immediate family at St. Thomas Aquinas, Waterford. All are welcome to join us for a celebration of Roz’s life Monday, February 22 at the Polish Center of Wisconsin, 6941 S. 68th Street, Franklin, WI, starting at 1 pm. Condolences c/o Mortimer’s Pub, 7023 W. Adler St., Milwaukee, WI 53214.

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Lasagna in the Darkness

Our life took a chaotic turn this past weekend. On Thursday, Keith mentioned that his stomach hurt. He didn’t seem overly uncomfortable, and there were no other concerning symptoms. On Friday, he thought he felt a little better, but then later it hurt again. I told him that if it still hurt in the morning, we should go in.

Saturday morning his stomach still hurt and I quickly realized that he was rather disorientated and off balance. So, by 7:30 that morning we were on our way to the emergency room.

While we were sitting in the exam room waiting to find out what was going on, my sister called with the news that my mother had a massive stroke that morning. She was unresponsive and the doctors were not hopeful of recovery. She had suffered a very minor stroke earlier in the week, and so was already in the hospital, but she had appeared to be doing well and was expected to recover. This was not altogether unexpected, therefore, but was shocking all the same.

A short time later, they told us that Keith needed an appendectomy. With my mind still reeling and trying to figure out how to travel the 600 miles back to my home town, I waited with Keith till they were ready for him in surgery and then, unable to stay on the patient floors, kissed him goodbye.

Several hours later I received the call from the surgeon that, not only was Keith’s appendix ruptured, but it was the worst she’d ever seen and he was in septic shock. He was placed in the ICU, where he has been receiving excellent care. The infection seems to have cleared at this point, but he’s been dealing with something they call “ICU Delirium,” and problems with his heart and lungs. Fortunately, I can go up and visit him, and have done so every day for a couple hours. He’s doing better, but still has a way to go.

Meanwhile, my mom has been transferred from the hospital to a nursing home and is receiving comfort care in their hospice area. My brothers and sister have been able to see her, but they all agree that I need to be here with Keith. There is nothing I can do for Mom now and the kids and Keith need me.

It’s been an exhausting week.

One of the biggest questions throughout this week has been, “HOW can these two events be happening at the same time??” It seems surreal. On what planet does a 62 year old man have a ruptured appendix the same day as my mother has a massive fatal stroke?? It just doesn’t seem possible.

As you can imagine, there have been many conversations happening. One of the most important was one I had with one of my daughters on Sunday. She commented that it seems like our family just keeps getting “tested” all the time and she wondered why God was letting this happen. I had been doing some thinking of my own already that day, but was coming to different conclusions.

Several weeks prior, we had planned to have all the kids over on Sunday to celebrate my birthday. The previous weekend, I had been gifted a large, 10 pound tube of frozen ground beef and a 5 pound package of mozzarella cheese. It popped into my mind to make lasagna for when the kids come over. Now, believe me when I tell you, never, in all my days that I can recall, have I ever actually followed through with such an idea. I might have thought many times how great it would be to make something ahead and freeze it, but I have NEVER actually done it. But, this time, I DID! I cooked all 10 pound of beef, I put together two beautiful pans of lasagna and tucked them away safely in the freezer, I bagged up all the rest of the meat and froze it, I even cleaned up my kitchen so that you would never have known that such miraculous happenings had occurred there. I felt like I was on FIRE!!

And then came this past weekend. As I sat here on Sunday, numb, going through the motions, just barely functioning while wiping rogue tears from my cheeks at random moments, my thoughts turned to those lasagnas. Thank God (literally) I had the foresight and the energy to make those lasagnas the previous weekend because I sure wasn’t up to making anything now! All I had to do was pull them out and pop them in the oven.

And that wasn’t all. I thought about how, on my actual birthday, earlier in the week, all my adult kids (except the Hawaiian contingent) were able to go out to dinner that night. It was rather unexpected and unplanned, but ended up being the best birthday I can recall.

See, God knew what we were going to be dealing with, and, in His infinite goodness and wisdom, gave us what we needed to handle it. He wasn’t testing us or sending a bizarre punishment for some misdeed. Rather, he had already laid into place things that were going to see us through this incredibly difficult time. I suppose one could ask, if He knew it, why did He let it happen? That’s a question above my pay grade though, I’m afraid. We simply don’t know why this is happening in this way. We may never know. Or maybe we will. The one thing I know for sure is that I have seen God’s hands in and out and through this whole situation. I don’t know why I need to be here tending to Keith, as well as my worried and grieving family, instead of sitting at my mother’s deathbed, but it is clear to me that I am. I know God has a plan and, even if I don’t know what it is, I can keep taking each day as it comes, watching and waiting to see where He leads us.

I intentionally don’t talk a lot about religion on here. This is probably the most I have ever said about God and my faith. Today I want to share with you though, that my faith is the deep current that flows in the depths of my being, keeping me moving forward, even when the surface becomes turbulent. In times like this, it is this deep knowledge that brings me peace and enables to me to continue going about my routine and doing what needs to be done, even when I really just feel like falling apart.

On Sunday, the last thing I wanted to do was go to church. Everything in me just wanted to curl up on the couch and be overwhelmed by my misery. But I got up. I showered. I dressed and got ready to go. I sat in the pew feeling shell shocked and on auto-pilot. Then Mass started and the Scripture passages were read. We began with Job 7:1-4,6-7. (By the way, if you ever think you have a rough life, go read about Job.) ” . . . So I have been assigned months of misery, and troubled nights have been allotted to me. . .My days are swifter than a weaver’s shuttle; they come to an end without hope. Remember that my life is like the wind; I shall not see happiness again.” Father focused on this for a lot of his homily. Even though Job says that his days come to an end without hope, he is not actually hopeless. In the depths of his sadness, he is talking to God. He may be complaining, maybe even ranting, but that’s ok. We can tell God when we feel like He’s being unfair, or even when we’re angry with Him. The important thing is that we keep talking to Him and allowing Him to work in our lives.

Then the Responsorial Psalm, Psalm 147:1-6, “Praise the Lord, who heals the brokenhearted,” was sung, a reading from Paul’s First Letter to the Corinthians, and finally the Gospel, Mark 1:29-39, in which Jesus heals Peter’s mother-in-law and many others. At every turn, I could feel God reaching out through His Scriptures and speaking to me. “I am here. I know your troubles. Everything is in accordance with My plan and My plan is good, even if you can not see why right now. Trust in me. I am with you.”

I can assure you, I am still a mess. I am occasionally a full blown basket case. Fortunately, I am blessed with a lot of supportive friends and coworkers who are so incredibly kind and prayerful. I don’t know what is going to happen in the end, and I don’t know how we are going to get through it, but I do know that somehow, someway, we will.

The thing is, blessings come to us in all different ways – a kind word from a friend, a Scripture passage, even a couple pans of lasagna (and the friend who gave you the ingredients!). I truly believe that, when we are open to seeing them, we will always find these little lights, even in the darkest and most difficult circumstances, and when we gather these lights up, they become the lamp that guides us. We don’t often see it when its happening – I didn’t know when I made that lasagna what my life was going to be like in a week or what it was going to mean to me to be able to have it ready to go when we needed it – but if we look for them, they’re there.

Thank you for any and all prayers. I will try to update soon.

Until next time . . . this is dementia.

 

Family Fun

In conversations with other caregivers, a common theme I hear about often is struggles with extended family members. You know the ones – people who think they know better, even though they haven’t been to see you in years and have no idea what your day to day life is like, or like to offer “helpful” suggestions like supplements, coconut oil, roots from some obscure plant in the Amazon because it has been “proven” to cure everything from hangnails to heart disease, or, everyone’s favorite, the ones who say, “Let me know if you need anything,” but then are never actually available when you ask.

The usual advice is to accept help only when it’s actually helpful, feel confident that you know your loved one best and that you are doing the very best you can for them, and let the negativity roll off your back. Sometimes there are more severe cases where a family member is doing things that are actually harmful or dangerous, like riling your loved one up by undermining doctor’s decisions, trying to convince them to not take needed medications or questioning why they need them, even trying to smuggle someone out of a nursing home. I’ve heard it all!

Fortunately, for most people, these types of things remain minor frustrations that come and go. In my personal experience, Keith’s siblings live a day’s drive away and, for the most part, have been content with periodic updates on his condition and trust me to do what is right by their brother. I appreciate their confidence in me tremendously and do not take it for granted.

Sometimes though, the problems caused by well meaning family members are different. Sometimes you have siblings who are all very willing to be involved, but have different ideas about what the right kind of care should be. Are Mom and Dad ok living on their own? How much help do they need and are we willing and able to provide it? Are they even willing to accept it? Is it okay to go against their wishes if we feel like it’s the right decision? The worst part is that, by the very nature of caregiving, often times there aren’t “right” answers to those questions, and even if you pick what seems to be the right answer today, one fall or medical event can change the situation dramatically overnight.

Now add to the situation, family drama and tensions that already exist. This sibling has always been over bearing and tries to run the show. This one has made poor decision all their life. He is *always* (fill in the blank with whatever negative characteristic fits). She only looks out for herself and wants to know what she’s going to get out of it. She moved away and left us to deal with everything.

It sucks. It takes an already stressful situation and makes it ten times worse. The kicker is, that most of the time, the real problem isn’t actually picking the right care for Mom and Dad – that part is probably relatively easy. The real problem is the drama that has been happening under the surface for years. Assumptions, secrecy, pot stirring, lack of communication, unwillingness to admit fault, put arguments aside, or forgive.

If we lived in a Hallmark movie, all of this drama would come to a head as family members attempted to solve the problem at hand. Everyone would yell, people would cry, Mom and Dad would make an impassioned plea for everyone to please stop arguing, some random doctor, store clerk, or homeless person would offer some sage advice that makes everyone pause and think, and then they’d all hug, promise to do better, and it they’d all go off to live happily every after, family connections restored, love abounding.

Wouldn’t that be nice??

Unfortunately, what actually happens most of the time is, nothing gets resolved, drama continues to simmer under the surface for the next several years, family gatherings are tense and awkward – if they even happen at all, and when Mom and Dad are gone, everyone goes their separate ways. There are hurt feelings, resentments, and blame. It may have all come to a head during the decisions about Mom and Dad’s care, but the reality is, it wasn’t about their care at all.

We’ve all heard of this and some of us have lived it, or are going through it now. The saddest part is, even if we see it, we are often powerless to actually do anything because, as we all know, we can’t change other people – we can only change ourselves and the way we choose to respond. Sometimes, the only thing we can do is hope for the best and trust that God will work everything out in the end.

Till next time . . . .this is dementia.

 

Look Out! She’s going to blow!!

We all have stress, right? Whether we’re caregivers, have a house full of small kids (or big kids), a young adult just starting out, or empty nesters. There’s just always that certain amount of stress that comes with living in our crazy, chaotic world. Naturally, there are some days that are more stressful than others, but for the most part, we usually hum along at a certain level that we are used to handling.

Sometimes though, things go a little crazy. Have you ever noticed how life has a funny way of throwing you not one new stresser, but a whole handful . . . all at once? It can’t be just one, right?? It’s more like, a major appliance stops working, the car starts making a funny noise, your paycheck doesn’t deposit on time because of a glitch at the bank, you go to make supper and the meat you wanted to use is bad, and then right after dinner, one of your kids throws up, kicking off a week of stomach flu running through the house.

Folks, it’s been a crazy couple weeks. After Keith’s COPD episode that landed him in the hospital overnight, he’s had some other issues that we’re still trying to figure out. He has 4 different appointments next week (yes, next week – Christmas week), one of which has been changed three times because they weren’t sure who we were supposed to be seeing, and another that was changed without asking us, necessitating the rescheduling of a different appointment that was supposed to be at the same time (are you confused yet?). Part of the issues he’s been experiencing are increased memory problems and confusion. This means that he has asked me for a run down of these appointments numerous times. I wrote them down on a piece of paper (before one of the times they changed), but then he lost the paper. We’ve also had an additional trip to the ER, some mix ups with his pills, and a number of those regular day to day issues that, one at a time, are not a big deal, but taken all together, just wear you out. Sigh . . . .

Here’s the thing with stress. We have our regular level, right? And then life throws in a few more, and we could handle that, except that regular life doesn’t stop. We still have all the normal things – plan meals, grocery shop, laundry, go to work – that need to be done. And now it’s mid December. There are cookies to bake, presents to buy and wrap, special dinners to plan. Yes, we can scale back and opt to do less, but then we just feel even worse because those are the FUN things – those are the things we WANT to do, the bright spots in our crappy weeks.

So you push on and do as much as you can muster the energy to do, and then you hear life saying, “Next!” and find out that a beloved cat – the one you are caring for while eldest daughter lives in Hawaii – has diabetes. Remember my last post where I mentioned not being a good nurse, and not doing well with new routines? I now have a new alarm on my phone that reminds me to feed said cat twice a day with his special food and administer insulin. Don’t worry – so far, so good. Kitty is feeling noticeably better and I love him so much it’s definitely worth it.

So, we did bake cookies this week, mainly because I wanted to make sure I got a tray into the kids’ school for the teachers, we have teacher gifts wrapped and ready for the kids to take to school tomorrow, and after tomorrow, I am off of work until Jan. 6. We also had take & bake pizza last night and leftovers tonight. It’s all about balance, right?

I am most definitely stressed, and my brain is full. I’ve been trying very hard to make my lists and assign tasks to various days, but sometimes it feels like I can’t even think straight because someone constantly wants or needs something. There’s worries about Keith, concerns about my elderly parents who will be moving to assisted living next month, necessitating a trip down to see them over Christmas break, adult kids who have things in their lives, the two youngest kids who seem to bicker nonstop (they’re 11 and 13 – I know this is normal), and, yes, still all the Christmas preparations to take care of. I know it will all get done, and I know it will be less stressful when we get to Christmas break tomorrow afternoon because, as much as I love my job, it’s one more thing that takes up brain space each day, but in the moment, in the day to day when the food is burning on the stove, the dogs are demanding to go out, the dishwasher STILL hasn’t been emptied, and you just want everyone to be quiet for 5 minutes .. . . . it just gets to be overwhelming.

But tomorrow is another day. The air in the school will be electric, the kids will be buzzing with excitement – and too much sugar from all their classroom parties – and I’m going to don my new Christmas sweater vest that has jingle bells sewn on it (an early Christmas present from one of the kids). There is always some stress to be found, but there is also always some joy. I’ll make my lists (and probably remake them a few times), celebrate another kid becoming an adult this weekend (she wants to go out for Poke Bowls – that’s something to be really joyful about!!), and, as I tick off my to do list, one thing at a time, try to remember what is important at the end of the day.

Merry Christmas, one and all. May you find more joy than stress in this last week before Christmas, and hopefully, even a little peace. And for whoever needs to hear this – yes, you should go ahead and eat that cookie . . . and a piece of fudge too while you’re at it. Remember – take the joy wherever you can find it . . . and there is a LOT of joy to be found in a container of homemade fudge.

Until next time . . . this is dementia.

 

Wake up call

So often, FTD is only one of the health challenges we have to navigate. If our loved ones have other medical issues, often complex in and of themselves, FTD adds yet another layer of complexity. My Sunday morning did not go anything like I anticipated. Keith went to bed Saturday night and was coughing – a lot. He has COPD so some coughing is just part of his normal, but it’s increased the last couple months. It started with a cold, and then the air is dry, so it could have been within the realm of normal. Some days would be a little worse, but then he would feel like he was getting better.

Saturday night was beyond worse. He was up and down out of bed several times, coughing up lots of mucous, and just generally sounding bad. After getting ready for bed myself, I sat there in the dark, listening to him, and seriously considered taking him in to the Emergency Room right then. But then I propped up his pillows with some extra blankets and he settled down to sleep for a while.

In the morning, however, just walking from our bedroom to the kitchen made him short of breath. This was nothing like his normal.

After calling the after hours nurse, we went to the hospital. By the time we got into a room, he was gasping for air and was in respiratory distress. His heart rate was erratic and he really looked pretty bad. Of course Covid came up, and they talked about admitting him to the ICU. Scary stuff.

Fortunately, the Covid test was negative (thank God!). The doctor was visibly relieved when he came to tell me. Keith was given oxygen, a nebulizer, steroids, fluids, antibiotics, and magnesium. He responded well and immediately began breathing better and his heart rate stabilized. They kept him overnight just in case, but he was able to be on a regular floor and not in ICU. Once he was comfortable, he fell fast asleep and slept the rest of the time we were in the ER before they came to take him upstairs. The doctor concluded that Keith caught the minor cold I had last week and it caused his COPD to flair up. He was very confident that Keith would be ready to come home today (Monday), likely on some oxygen or with a nebulizer to use at home when he needed it.

I am very relieved that he is doing well, but what a wake up call! If his COPD is getting this bad, never mind Covid, we need to be careful to not bring ANYTHING home to him! Quite a challenge with two school aged kids!

As you likely know, COPD is hard enough, but now we add the layer of FTD and get all kinds of extra problems. If he comes home with oxygen, will he monitor it correctly and follow the doctor’s orders? Will he remember to turn it off and/or leave it in the house if he goes out to smoke? (Don’t even get me started on this one – as sick as he was, he had a cigarette in the car on the way to the hospital Sunday morning!) There are safety issues (pretty major ones!), quality of life concerns, questions about what happens next time – because there will be “next time”, and . . . and . . . and . . .. I know not to borrow trouble, but there’s a certain amount of thinking one has to do about the future and how we go forward from here. He was definitely cognitively affected by it, and while that should clear up, the question looms, “What if it doesn’t?” It’s more things I will carry around on my mental checklist each day, more questions, more things I need to be aware of.

In case anybody ever wondered, I am not a good nurse. I tend to be absent minded (always have been) and stink at remembering things like changing bandages daily, asking about taking antibiotics, checking to see if he changed the pad for the corn on his toe . . . . pretty much anything that is new or out of the ordinary routine. Once in a routine, I do pretty good most of the time (the medicine box needs to be filled on Wednesdays), but throw in something extra, and it’s a crap shoot. So, anytime we have something new coming at us, I get a little concerned that I won’t remember things, particularly now that I have almost daily reminders that Keith’s memory and sense of time has really gotten bad (no, Honey, that cough has been going on for almost 2 months, not just a couple weeks; no, you didn’t have 3 covid tests in the last couple weeks – it was over the last 3 months). My natural tendency to be forgetful has been one of the greater challenges in this entire journey as I try to not only remember my own stuff, but his as well. So today, my mind whirls with what new things we may have to incorporate to help keep Keith healthy.

I’ve just heard from the nurse that, if he does ok without oxygen, he’ll be able to come home today. I’m thankful that they want to send him home without needing oxygen. One thing I can cross off my list . . . for now, anyway. I used up way too much brain space today thinking about the trip we are supposed to take in March to see our daughter in Hawaii. I envisioned us navigating airport terminals while I pushed him in a wheelchair and carried his oxygen tank, along with all the bags and everything else we will need to bring. I guess the bright side is — we’d get to be the first ones boarding the plane!

Wishing you all a blessed Advent and, if I’m not back to post in the next couple weeks, a Merry Christmas! Until next time . . . this is dementia.

 

One Rare Bird

I know I’ve kept you waiting. I started a new job recently (I’ve traded my bus keys for an apron and am now a lunch lady at our kids’ school!) and have been adjusting to a new schedule that’s pretty much the opposite of what I’d been doing. So, you know, life. I thought maybe you would all like something more uplifting to read today than the election coverage so . . . here we are!

With relief, we finally received confirmation late last week that Keith’s tumor is benign. They called it a focal myositis. It’s very rare, especially in that area of the body, but generally resolves on it’s own. Reading the pathologist’s report, you could almost hear how excited he was to have gotten to diagnosis it. He actually said thank you for allowing him to work on the case! Ha! So, for now, we just keep an eye on it to make sure it doesn’t continue growing or cause any other issues. So crazy. The man with a rare dementia, now has a rare benign tumor. Go figure. Maybe we should start playing the lottery!

Memory issues have continued to be more prevalent, but its manageable. After a visit with the neurologist, it may be due to the gabapentin he’s taking for his back pain, but it’s a chicken or the egg thing, and ultimately doesn’t matter. The gabapentin is keeping his pain at a tolerable level so, what do you do? The little mix ups of what day it is or having to repeat information occasionally is a small price to pay for some comfort. We discussed surgery with the neurologist but there are no guarantees and, because anesthesia can be really hard on FTD brains, they aren’t eager to do it. Work is the one thing that makes the pain unbearable, so I’m not sure how long he’ll be able to keep doing his two days a week, but that’s yet another decision. It’s really hard to know the best thing to do.

I think I’m going to leave things here today. The air everywhere feels charged with anticipation as we await the election results. I’d like to share something I’ve alluded to a few times in various conversations:

Try to remember, no matter who ends up winning this thing, all they’ve done is win an election. Neither is going to be a Savior, nor are they going to be the downfall of civilization. Rather than wasting precious energy worrying about who will be sitting in the Oval Office for the next four years and what they may or may not do while there, channel that energy into things that will matter to the people around you right now. Let someone go ahead of you in line, throw a few extra groceries in your cart for the food bank (and please make it good groceries – not just the cast offs from the back of your pantry), help out or donate to your local pregnancy resource center, serve a meal at a homeless shelter and take the next step of visiting with the people there and listening to their stories. There are so many ways we can change our own little corner of the world every single day. Life is precious and short. Don’t squander it.

Till next time . . . this is dementia.