How I feel about grief now

I had to do something different.

The years of full-time caregiving for my husband, Dave, with early onset Alzeimer’s, were years of sadness, trauma, uncertainty, fear, anger…name it, it was part of the daily journey.

When you are dealing with early onset Alzheimer’s, there is no possible different outcome than the progression of the disease slowly deteriorating the brain and taking with it the functions in the body that the brain controls…which is all the things.

So grieving daily is part of the deal. You can’t avoid it. In my case, my husband knew of me, and occasionally said my name. Relationally, he was gone for many years. His body remained strong until the last week, but his thinking and reasoning abilities were gone.

Grief. We talk about it and around it. We know of it. We don’t always know what to do with it or what to do with people who are experiencing it. We try to avoid it, because it hurts.

For years, I tried to stuff it down. It wasn’t until the last couple of years that I realized what I was doing. My best friend might even remember that day we were talking and I paused and said, “you know what? I think …I’m grieving. Every day. And it never feels better.”

I had never had a bad blood draw report, until I was a caregiver.

But, it wasn’t the daily grieving that was hurting me.

It was trying to avoid, hide and stuff the grieving that was hurting me. And I don’t mean just not crying. Crying isn’t always grieving.

The last year of caregiving, when I was kind of forced to get serious about what was happening to my health, I had to take some advice, and lean into the fullness of the grieving process. I had to let myself feel all the things that I didn’t want to feel. It was like leaning on a thorn, or a bunch of thorns.

And it was in that leaning and accepting, that I started to understand grieving.

Grieving is not so that you can close a chapter. Grieving is not so that you can move on. Grieving fully, will first open you up in ways you may not like, but then you have the choice in how you want to heal. You don’t move on from grief, you move differently with grief.

It’s not easy, friends. It’s not pleasant. It hurts. And it’s taken me 5 years to understand that grieving can be beautiful, healing, and restorative.

You simply cannot love or be loved, without the acceptance that grief is a part of what makes love so rich.

Caregiving / The lesson I learned from the knot in my neck part 2

The lesson from the knot in my neck, pt 2.

I started to pay attention to other things that would “activate” the burning sensation in my back or the knot in my neck.

Social media activism or more specifically, armchair activism via social media, was one of those things.

For example, I had at one point decreased the number of political accounts that I followed to 2. And, I’d check them every day. It wasn’t doing anything good for me. I’d get my feathers all ruffled up and grumble, worry, stew.

It took some doing, but I completely stopped passively consuming everything political on social media. I skipped over it. If I mindlessly started down a rabbit hole that was not helpful, I would turn my phone off temporarily, like it was a hot potato, so I could gain control again. And, now, it’s so peaceful, friends.

The reason I tell you this is, the mental strength and peace that I had during the last months of Dave’s life and even the day of his passing, wasn’t just natural. I worked for that. The year before, I was a mess.

I fought for that peace and strength, with intentional choices, even down to paying attention to what I was passively consuming online and if that was doing anything good or positive.

I’m not a social media basher. Read the old testament some time and you’ll stop saying that our generation is the worst it’s been. There was some bad stuff happening long before …any kind of phone.

Choices, friends. Do you want to feel more peace? Do you want a stronger mind? Do you want a stronger body? Choices. Discipline.

There you go, friends. That’s my story for today.

Caregiving / The lesson I learned from the knot in my neck.

The lesson from the knot in my neck.

During the last year of caregiving for my husband who had early onset Alzheimer’s, I had a chronic knot in my neck and the pain and stiffness would spread to my shoulder and spine, always on the same side, every day.

Anything I tried to loosen it up, was always temporary…massage, chiropractic, deep tissue work, immersion tank, exercise, sleeping, hydration… It was just always there.

The first time I got away for a couple days of respite, I woke up and the knot was just gone. I thought maybe I had slept better, maybe it was just my pillows at home. Driving, as I got closer to home the knot returned, as if on cue.

And I realized that I was doing it to myself, by how I handled the stress of caregiving. I was basically carrying around a stress knot. I joked with my chiropractor, Dr. Leon, that I needed to learn to carry my stress in a different place and he said, ‘how about outside your body.’ 🙂

What a concept. I started to visualize what that would be like. Because, we know that inflammation is a necessary part of how our body works to fix things, but chronic inflammation can become detrimental and can do permanent damage.

Just that awareness has been life changing. If I start to react to a stressful situation, I still feel it immediately in that same part of my neck and shoulder and I get a burning sensation along my spine.

Stress is inevitable. How you respond to and carry it or if you carry it, is a choice. And, you can change that behavior.

And, I learned that lesson, during the most difficult part of my life…so far.

Early Onset Alzheimer’s - It’s Just Not Fair

My husband was diagnosed with young onset Alzheimer’s shortly after his 59th birthday. He lived three and a half years after diagnosis and this is my caregiving story.

How many times did I tell my boys when they would come crying to me about something that wasn’t fair, “You know, life isn’t fair.”

I have put off blogging about this part of our story. But, a friend said that maybe someone is searching the internet, the way I, as the spousal caregiver, have done, looking for answers and comfort.

So, let’s get one thing straight right away. Early Onset Alzheimer’s, typically diagnosed before age 65, isn’t fair. It strikes quite a blow. It hurts everyone around the person with Alzheimer’s. Diseases aren’t fair, but the one I know about firsthand is Early Onset Alzheimer’s and taking care of a spouse, watching him deteriorate day by day.

I still don’t know how I’m going to organize these posts about our Alzheimer’s experience, but I think starting with a little about us pre-diagnosis, is a necessary background to our story.

August 18, 2023, was our 38th anniversary.

But, dementia had already stolen our relationship. For the last 10 years, my husband had been afraid that he would end up with Alzheimer’s. His dad had age related or late onset dementia, probably Alzheimer’s. And his brother had young onset Alzheimer’s with Lew Bodies dementia in the last weeks, and was also diagnosed at age 59. There was no reason to believe that it was inevitable for Dave. His doctor would test him from time to time and he had a little forgetfulness, but it really looked more like he was just not paying as much attention to details. He went on like this for 8 years.

We continued traveling, going on marriage cruises and mission trips. Everything seemed okay. Until it wasn’t. In 2018, according to my journal, he was getting slower to respond when he was driving. I reasoned it away, blaming my own nervousness as a passenger in the car, maybe I was getting more cautious with age. I didn’t know, but I didn’t feel safe like I had in prior years. I was concerned enough, that I strongly suggested we postpone buying our RV. We had the RV picked out, just waiting to pull the trigger. But, something didn’t seem right.

Dave had always driven on our road trips, sometimes letting me drive when he got really tired, but that wasn’t often. But, on one trip, he started reacting by doing the opposite of the directions I would give, if I didn’t say them well in advance. I would tell him to turn left, and he would turn right. Naturally, my instinct was to ask him if he just wasn’t listening to me. This happened over and over, so I started preparing miles ahead of time to make sure he was in the correct lane when it was time to turn.

There were other little things over the next 2 years, that would just puzzle me. He’d go out to fix something and choose the wrong tools or materials. He would map destinations in town that were well known stops for us. He was hiding things from me and lying about why he was going shopping.

Thanksgiving Day, 2020. Our family feast wasn’t until that Saturday, so I got up early to take advantage of a day in the studio that we had been working on. I was having such a wonderful morning, sewing and listening to music. I had worked hard on my online business for 16 years and this was the year I was getting my sewing studio set up, so I could enjoy my hobbies more. I was so happy that a dream was coming true! I could hear Dave coming and going, in and out, lots of doors opening and closing, but I figured he was just being productive. Then, I overheard him tell one of our sons on the phone, that he was leaving for Texas, that we were getting divorced.

I stopped what I was doing and went and asked him “What did you just say??” He looked at me and said, “we talked about it last night.” My son was still on the phone and he said, “Mom, is this true?” All the activity I was hearing while I was happy as a clam in my studio, the doors opening and closing, was my husband, packing up as much as he could in the pickup.

I was confused and hurt. I couldn’t figure out what he was talking about. My sons all came home and there were tears and hugs and Dave agreed to wait until we talked to our marriage coach, which we did the following Monday. During that consultation, I was urged to get Dave to his doctor as soon as possible. His doctor ordered testing with a neuropsychologist, who along with Dave’s doctor agreed that he was already in the moderate stages of dementia, probably young onset Alzheimer’s type. He had just had his 59th birthday. Our whole world felt like it was swirling out of control.

That’s the short background. Dave’s actions were not ones that he would have taken had his brain been functioning normally. We all know that now, so when I write about these early days before and after diagnosis with early onset Alzheimer’s, please understand that the hurt, pain, confusion, trauma that kept occurring over the next few years of caregiving, I know were not his fault. But, I’m going to write as openly as I can in the hopes that if you are a caregiver for a spouse who is reading this now, you will know that someone in the world, understands.

Anne

Will I laugh again? Caregiver, you will.

Hi. My name is Anne Dovel. I cared for my husband as he wasted away with Early Onset Alzheimer’s. These are some notes and reflections I’ve had since his release from this earth last summer.

I wonder if I’ll laugh again? That was one question I asked myself the first year of full-time caregiving for my husband (who had early onset Alzheimer’s.)

The first six months after the doctor told me to take Dave’s keys away, make sure firearms and knives were locked up securely, don’t let him use power tools, keep my keys and money out of reach, look into getting a security system to monitor all the doors and various other directives to keep Dave and my family safe, I didn’t laugh much. Those first six months, I canceled all travel plans, and I only left the house alone 4 times, for appointments. It was during this stage that only a few family members knew that Dave had young Alzheimer’s. It was a desperately lonely confusing time. I felt like there was nothing to laugh about.

I was told by more than one medical person that I needed to cry, I needed to laugh. Interesting how each of those helps your nervous system, and I did neither. No wonder my nervous system was all jacked up by year 2.

I’ve always been more of a laugher than a cryer. In fact, Dave often “knew” me by my laugh, when he didn’t know who I was in person.

Much further down the dementia road, after I had given myself permission to laugh again, I was on the phone, and started laughing with a friend, over something really silly…uncontrollable laughter, the kind that brings you to tears.

Dave heard me laughing and walked into the dining room and said, “Someone’s going to need to sedate her.” Talk about uncontrollable laughter after that.

It is interesting to me, that I can sit in front of the fire, like I am right now, and relive the trauma of the last few years in my head, and put my brain into a despair mode….I can also do the same with joyful experiences.

And that is one way that I not only learned how to cope, but to heal. When I’m feeling that searing pain in my back, (which I still do) from stressful thinking, I can flip the switch if I want to, and think myself into a calm state.

You can draw up pain, and create the same response in your body as if you are experiencing that same situation again. You can also draw up joy. Sometimes all I need is to hear Dave saying to himself….”someone is going to need to sedate her.”

Sit with it. Healing happens by feeling.

There were a lot of quotes, sayings, ideas that came across my feed and in messages, during my years as a caregiver. I’ll be honest, some of them made me angry in the moment. Some of them I dismissed, knowing I wasn’t in a position to receive the “feel good” message. But this one… during year 3 of caregiving…

“Sit with it. Sit with it. Sit with it. Sit with it. Even though you want to run. Even though it’s heavy and difficult. Even though you’re not quite sure of the way through. Healing happens by feeling.”

During Year 1…didn’t want to hear it. Year 2…Just don’t… Year 3…Okay, I’ll try that. Year 4…I am glad I got that in year 3.

Healing starts to happen, when you let yourself feel all the emotions, pain, uncertainty, questions…And, I mean, really feel it, down to your bones.

Healing does not mean that the pain is gone or sadness doesn’t creep in. But it gives you the space to allow it, and grow through it. To become whole, even when something feels missing.

I only let myself half-feel during the first 2 years of caregiving. I suppose I told myself I had to be strong.

I was on the verge of tears, daily, for 2 years, before I finally let myself fully feel and let the tears flow; until I finally let myself feel all the pain, emotionally. And, that was just a turning point.

It was a small pivot, but a pivot in a healthy direction, to accept and heal. And, during that year, as Dave became more difficult, more distant, wandering, breaking and hiding things…. I made the decision that I had to listen to the advice of my health care people, and do something proactive to take care of myself.

I worked really really hard the last year or so of Dave’s life; physically, mentally, spiritually. And it wasn’t easy or fun.

But, where that all started in earnest, was when I allowed myself to sit in all of it…the messy, the past, the future, the pain… And, the difference from that and what I had done the previous 2 years, was that after ”sitting in it,” I got up and did something proactive.

I will tell you now from this vantage point, ”the valley” taught me a lot, and I didn’t like it, I wouldn’t choose it, but I really can look back now and at the very least, appreciate what I learned about God, about me, about life, about friendships, about family….in the valley.

Mountaintops are nice and glorious. But, I appreciate those moments so much more now, than I did 3 years ago.

(And, I would not have listened to you if you had told me this during the hardest years…I couldn’t. So, don’t feel bad if you are reading this, during a hard time, and thinking… you are crazy, Anne…I can take it. I understand. And, it’s okay to feel that way too.)

Anne

The Never Ending Question - But…How are you…Really?

How…are you doing….really?

(after the loss of my husband who had young onset Alzheimer’s…for new friends here.)

I want to answer that frequent question, publicly and openly and honestly. Because if Dave’s passing was a surprise to you, as it was to many, it was not a surprise for his family.

I am doing very well, thank you. Truthfully. And, here are a few reasons why. (This is really for education, not sympathy!)

1. Dave was diagnosed three years ago, but according to the neuropsychologist and his doctor, he was in the moderate to advanced stage already by the time I admitted to myself that something was wrong in 2020. I can look back now, and see early signs all the way back to when we bought this house in 2014, possibly before, and more pronounced behavioral signs by 2017.

2. I was never in denial about what the disease was or would do. I may have been in denial about how much I could handle, but not about the disease. We’d been on the edges of watching his brother go through it, so it wasn’t a surprise to me.

There is currently no cure, no way to stop it, no way to slow down the disease and limited understanding as to why it’s different than standard Alzheimer’s. The only thing we could hope and pray for was that Dave would hold onto his ability to meet his basic needs as long as possible.

3. I knew that the decline would appear to be gradual for an undetermined period of time, and at some point, the line on the graph would take a sharp dive. We experienced the beginning of that dive in April, which prompted his entering a home in May. By August, the imaginary line on the graph had hit the bottom, and there were no meds that even touched the behavior issues. He was in terminal agitation by that point, we just didn’t now for sure.

4. I had 3 years to prepare for handling things on my own. Dave’s inability to make decisions or even follow directions, started occurring over 5 years ago. I’ve been our family’s provider for the last 14 years, and have always had the responsibility of handling paperwork and Dave was the muscles.

Dave recognized my laugh, even when he didn’t know me. He would hear me in a video and say, “that’s Anne’s laugh…I miss that..” and I would be right there.

Early Onset Alzheimer’s is a terrible, terminal disease…not that any disease is good. But, I’m super grateful that he is no longer in torment. He was scared, weepy, paranoid, had hallucinations, wasn’t sure how he had met me, didn’t know how many kids he had….he was no longer Dave. His body and bloodwork was strong up until he passed.

So, while for some, it seems like it was sudden or he went quickly, it was more like 8 years.

So, yes, really. I am well. I am ready and excited for this new chapter. I am joyful, prepared, and happy. We will always miss the Dave that dementia took away.

Anne Dovel

David Wayne Dovel 5/29/61-8/25/23

Early Onset Alzheimer's -

My husband was diagnosed with Early Onset Alzheimer’s Disease at age 59 and I’m sharing what it means to be a full-time caregiver for someone with this cruel disease.

It’s the middle of August 2023 and my husband has been living in an Alzheimer’s care community for almost 4 months now. I can’t count the number of times I’ve questioned my decision to move him. If anything, But, thankfully, I listened to several around me, and got him settled in before he was in the more advanced stages of early onset dementia. In the last 2 weeks, his disease has taken a turn and he has become much more agitated and restless, not wanting to sit down for the staff at the home. He has to be prompted to eat and have someone with him to make sure he takes those first bites. He started sprinting in the hallways, knocked another male resident down, and then Saturday evening, he tore the fire alarm off the wall, causing the alarm to go off and the fire department had to come turn it off.

He was sent to the ER Saturday evening when the staff could not calm him down, then again on Sunday morning, when he complained of chest pains.

*****

Early Onset Alzheimer’s - You Can’t See It In This Photo

You can’t see early onset Alzheimer’s in this picture….

But it’s there. On this day at church, our 3 boys came and we took a quick photo outside afterwards. This was August 2022, so by this time, my husband was confused a majority of the day. At home, he was paranoid and often weepy, sometimes asking if I had seen “Anne,” me, in other words, or some younger version of me that he could remember. He was breaking and hiding stuff, hoarding things in the drawer by his bed.

Friends, I’m still finding little stashes of tea bag tags, lifesaver wrappers, pistachio shells, granola bar wrappers, bits of his dogs fur, broken Q-tips, and rocks. Every time I clean out another drawer, or move something around, I find his “treasures.”

You can’t see that there’s dementia in this photo. Because it’s not a disease that you can see; at least not right away. You might pick up on behaviors that are odd, or memory issues. But, at the time of this picture, he was in his 3rd year after diagnosis, with several years prior to that, where he had exhibited the first signs of early onset Alzheimer’s. There were people at church who didn’t realize Dave wasn’t really “there.” He was so good at hiding it. He would laugh, like he usually did. He would act like he knew what someone was talking about, or act like he knew someone. And, he just didn’t talk as much, letting others talk around him, and he would just smile and laugh, pat people on the backs.

As a caregiver spouse to someone with early onset Alzheimer’s, one of the many difficult things that people would say to me, was, “he looks pretty normal to me.” Which, when you are physically, mentally and emotionally exhausted from 24/7 care, even if the intent was good, what I felt was, “they think I’m making it up.” But, if I started to explain to someone what was really going on, I felt like I was a “tattle tale.” If you are a caregiver spouse, you know what I’m saying.

Thanks for stopping by, friends. This is a short post, based on my Facebook post today. What would you like me to share next?

Anne

By the way, If you are a friend or family member who wants updates, I updated CaringBridge today. https://www.caringbridge.org/visit/caregiverupdates/journal/view/id/64cfa2e3e5bf45548bdac973

My husband was diagnosed with Early Onset Alzheimer’s Disease at age 59 and I’m sharing what it means to be a full-time caregiver for someone with this cruel disease.

Crushing Loneliness as an Alzheimers Caregiver

My husband was diagnosed with Early Onset Alzheimer’s Disease at age 59 and I’m sharing what it means to be a full-time caregiver for someone with this cruel disease.

I’ve read about it and I’ve lived it and am still living it now. Being a caregiver for a spouse with early or young onset Alzheimer’s really is the loneliest I’ve ever been in my life. I’ve written briefly about this last fall as I started to realize that I was grieving, even though my husband is still living.

He is living and he is my husband on paper, but the disease took the relationship away years ago. One day, I think I’m over the fence, as far as grieving goes and then it’ll come up to smack me, right in the face. As with any grieving, there really is no end to the grieving, it just changes. If you move your spouse with early onset Alzheimer’s into a care community, and you are no longer physically the full-time caregiver, you still have grief, because they are there to remind you of what you’ve lost.

When I started the healing process from having been a full-time caregiver, and moving my husband into Country House Alzheimer’s community in Lincoln, Nebraska, the grieving just changed, like the sky changing color during sunset. Same day, same sky, shifting colors and patterns.

My husband moved out of our house the first week of May. It is now the middle of July. It took a month for me to start really sleeping again. It took that long to realize I was not tethered to my caregiver “chair of despair” as I jokingly called it. It’s all a transition. Just like he had to make a transition, his friends and family have also been transitioning.

And friends, no matter how much I’ve prayed, no matter how many days I’ve had when I felt the sun shining again, when a storm cloud comes, I have a hard time shaking it. Caregiving didn’t end when he moved into the care community, it just changed.

And the loneliness stinks. But, it’s something I know I have to sit in, sit in, sit in, and feel it fully, before I can heal from the trauma that causes it.

Blessings to you if you are on this road too.

Anne