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

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

Caregiver jealousy

Out of love and respect for my husband, I have written only surface level on this blog, and I haven’t posted pictures of him in the struggle, because I know he wouldn’t want that.

But today, I want to talk about jealousy. It’s been a really long week. I’ve tried to be a light, and my wick seems to have gotten too short. When I try pouring into others, I have tremendous setbacks emotionally, and I think it’s because I have tried to pour from an empty cup.

Anything I say about my husband in this caregiving blog, please understand, he is not the same person or personality. And I know we all go through changes as we age, but if what I’ve shared in this blog is new to you, it’s probably hard to understand. And, it’s equally hard for me to even put it into words, but I’m going to try. Because one of the biggest frustrations early on for me, was the feeling that no one got it. There’s one youtube channel, where the couple have posted about the husband’s journey and how he fell in love with her all over again. Let me tell you, that doesn’t happen often, if you dig deeper and go to Alzheimer’s message boards. I’m glad they had those moments. But, I’m trying to be really honest about my journey, so if you are starting or on a similar path, you know you are not alone.

“For better, for worse, for richer, for poorer, in sickness and in health.” We signed that contract to each other over 37 years ago. We’ve had our ups and downs, as every longterm marriage will have. But, when dementia comes into the picture, “for better for worse, sickness and in health” is tested to the extreme. I love my husband, but I don’t like him right now. And that will sound harsh, if you don’t know know who we are; maybe it will sound harsh no matter. But, I’m here to be honest and up front.

I would describe the last few days as feeling desperately lonely and in despair. It’s kind of like a wave that hits me every so often. I went on my nightly wander on our acreage, which I’ve been doing for the past couple of weeks. I walked 5.11 miles, trying to make sense of why I felt the way I did. I know I’m not the only one suffering or the only one experiencing loss. But, I came to the conclusion as I walked back to the house in the rain, that I was jealous. I know I’ve been fighting off bitterness like it’s the plague, but didn’t notice jealousy has snuck in. And, I never have liked how jealousy looks on me.

But that’s what it is. I am jealous of friends and family who get to move forward in their lives, jealous of sons who can make plans to be out of the house with ease. I’m jealous of our couple friends who get to be out doing couple things. I think I’ve even been jealous of my husband, who is at the stage now, where he doesn’t know what worry really is. I’m jealous of friends who can tell me ‘I’ll pray for you both’ and be able to go out and have a lovely evening with friends, while I’m here, hoping my husband will go to bed early so I can let down my guard, do a little work, catch up on some chores. And on and on it goes. I told you, I don’t like how jealousy looks on me. But, that’s why my tears have returned. It’s why I go out on my walks and find myself sobbing on the ground, and not even really knowing why. I’ve named one of our pastures, the “Why and Cry pasture” because that’s usually where I’m asking God why? and well, I think the other part is self-explanatory.

When I was a young girl, maybe 9 or 10, our family had gotten home from music lessons or something, and I was the last one in the jeep. The emergency brake didn’t hold and as I was draped across the seat, not wanting to get out of the car yet to go in the house, I heard the click, click, click, click getting faster as the vehicle rolled down the hill and into the back of my dad’s shop. I had gotten into the driver’s seat, but had never driven before and didn’t know the brake pedal from the accelerator. Plus, I didn’t know that the accelerator wouldn’t do anything if I pressed on it. So, I rolled with the car until the building stopped it. I didn’t feel too shook up, at the time, but mom and dad were. And, when everyone else went to bed, dad let me sit in the recliner with him, and he just held me. Friends, that’s something I miss, as a caregiver with a spouse who has early onset dementia, whose disease is manifesting itself with paranoia and delusions about me, along with the memory loss and executive function loss. I can be a pretty independent, confident woman, but that night in the pasture, I really just wanted someone to hold me, like dad had when I was a kid.

I’ve thought about that moment, and how that felt. And other times, when I was broken to the point of just needing to be held; not needing advice or any other words. Just held. My husband has been afraid to even touch my laundry, let alone me, for the last 2 years. And, I know that it is just what dementia has done to his brain. He would feel really badly, if he knew some of the things that dementia was doing to him. Six years ago, we were clicking on all cylinders and honestly having the best experience of our entire marriage. So, I’m grateful and very blessed that we had that time.

But now, for the duration of his disease, wherever that takes us and for how long it takes, I have to learn how to respond to the stress in a better way and learn to be okay, being alone. I’ve practiced solitude, and that’s not what I mean here. I mean alone, without a partner to hold my hand or hug me when life is overwhelming. And, I know that many have done it before me, and I won’t be the last. But, it kind of stings right now, in this kind of grey area where I’m married on paper, but a widow in my daily interactions, where once we were active with other couples and now we aren’t; where once I could pour into someone else, and now it’s hard to do that, even if I want to.

I’ve promised to share some light news and ways I have been learning to take better care of myself, so I am able to keep taking care of my husband, and not let this disease take me out as well. But, today, I wanted to share about jealousy. And honestly, I am in the process of working through it, knowing that it’s up to me to work on my mindset.

Love to you, if you are on this journey as well.

Anne

Caregiver Confession - I Just Wanted to Run Away

My caregiver confession to you today, is that there have been times when I just wanted to run away.

With young onset Alzheimer’s, it becomes noticeable and is diagnosed before age 65. Typically, it progresses more aggressively than later life Alzheimer’s. But, there is not timeline. And with no timeline or even expectation of the rate of progression, it becomes overwhelming to the caregiver, very quickly.

So, here we are, starting our third year of my husband’s disease, although to be frank, there were signs two to three years earlier, just off and on.

I felt like I could handle it, full time caregiving. And in the beginning, which I’ve written about a little bit earlier in the blog, a lot of my attention was on all the legal and financial forms and steps that I needed to get done. That kept me pretty busy for months. And, it was the time that was probably the hardest on my husband. Suddenly, though he had been getting lost when he was running errands for over a year before this, his doctors said he couldn’t drive, couldn’t use firearms, and shouldn’t use any power tools that might cause serious injury if he had a lapse in judgement, such as with a chainsaw, for instance. So, he became very restless and irritable at me, who seemed like the one who was making all the rules. But, my marriage advisor told me, I had to stay calm and not take anything personally.

In the first 6 months, from November to April, I left the house a total of 4 times by myself. Our lives were turned upside down. My husband was still fairly lucid more often than he is now. But, he had moments he thought we were divorced. One day, he looked me in the eyes and asked me if I had seen Anne. I asked him to repeat it, and he asked again. I said jokingly, “well, which one?” And he recovered, realized he had made some mistake and said, “oh, well you, of course.” That was in the first year.

As the days wore on, and all the decisions fell on my shoulders, and I gained weight and had few clothes that fit me, I had moments, when I just wanted to run away. We had had so many fun adventures and trips, mixed in with all the normal ups and downs of a longterm marriage. And it all stopped. I missed that life. We were no longer a couple, but a caregiver and a caregivee. And it hurt. It still hurts. But, I’m coping much better, and I haven’t run away.

Anne