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.
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.
Early Onset Alzheimer’s — Not Fair
/My husband was diagnosed with young onset Alzheimer’s at age 59.
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.
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 good beginning.
This August will be our 37th anniversary.
But, dementia has already stolen our relationship. For the last 10 years, my husband has 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 Lew Bodies dementia. 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 seems just fine. 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. But, I was concerned enough, that I postponed our goal to buy an RV. 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.
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 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 heard 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 he had said? He looked at me and said, “we talked about it last night.” And all the doors opening and closing, while I was blissfully creating in my studio, were him 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 had moderate dementia, probably young onset Alzheimer’s type.
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.
Anne
Settling my husband into the Alzheimer’s care facility
/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.
To keep this update quick and simple, I’ve copied from my Caring Bridge blog.
Dave has transitioned into living at the care center really well, all things considered. The boys have gone to visit frequently, as have other family members. I go once a week. He seems to recognize me, but after a few minutes gets distracted and walks off. If you are wanting to go visit, he loves being in the courtyard. There’s a sidewalk path. Visits don’t have to be long. The boys had been taking him for drives, but after the last time, the director suggested it may be too difficult for him and for the boys, emotionally, to go out with them. He tried to unbuckle his seat belt and get out of the car when Luke was driving and then, because he can’t verbalize what he needs, he yelled at Luke that he thought he was trying to murder him. That rattled Luke’s cage a bit, even though he understands it’s not really the dad he knows, telling him that.
I questioned my decision over and over, to move Dave into a care center, but after my last visit, it was clear that it really was time for skilled people to take care of him.
The director said Dave follows the staff around and they give him jobs to do. And he can be outside, in the courtyard, and I don’t have to worry about him wandering out to the road, or getting lost.
I think the boys are starting to adjust. I see a lot more smiles and less worry and tears. I’ve encouraged them to move forward and set some new goals, live their fullest lives.
I am sleeping back in my room again. The first 2 weeks Dave was in the residence, I felt like a spinning top, seeing all the things I had neglected over the last 2 years, inside and outside, and feeling like I needed to get everything up to snuff… now. But, I’m trying to pace myself.
Thank you for your continued prayers and encouragement. Dave is in a good place, being cared for by good people.
Choosing an Alzheimer’s care home
/Hello friends and family,
Today is the update I knew I would have to make some day and hoped I wouldn’t have to make some day.
Dave’s disease progression has become more obvious the past few weeks. Daily tasks like getting dressed and undressed are confusing to him. He’s started trying to sneak out of the house again. And he’s having trouble getting words to come out correctly. There’s a lot more, but those are the more obvious changes.
My niece called around and found an Azheimer’s facility that does “day stays” and encouraged me to check it out…Many have been telling me that it’s time or past time to seek out professional care for Dave.
After the first tour, I described to a friend, that for me, it was as if all of the emotions of the last 3+ years came bubbling up at the same time, mixed with relief and guilt.
Long story shorter… I have talked with the boys, and they agree on the plan to move forward with “day stay” care at Country House at 84th and Pine Lake in Lincoln, 3 times a week, as early as next week, and transition into full time care by end of May. The things I think Dave will like about the home are the daily bus rides, to places like Village Inn for pie, Baker’s chocolates and other fun outings.
We may ask for some help in moving furniture as that day approaches, probably more for moral support, as this will be be a very difficult transition for Adam, Luke and Davey, especially. All I need to buy is a twin bed and will send the end table he’s used to, the chair from the living room, and his favorite afghan and pillows. Thank you for your continued love, support, and prayers. At both facilities that I toured, the people who gave me the information and tours, were amazed at the incredible support community we have around us. From the bottom of my heart, I thank you all. Love, Anne
Early Onset Alzheimer's - Decision to Move Husband into a Care Community
/The decision to move my husband who has early onset alzheimer’s into a care community before his 62nd birthday was difficult, lonely, and long overdue.
Read MoreCaregiving Blog Update - Quite Frankly, I Quit…
/My last entry in this series of blog posts about being a caregiver for my husband with early onset Alzheimer’s, was almost 6 months ago. I had been journaling for years, but had only begun to finally make public, in really just surface level blogging, what it was like.
And, I was starting to feel okay about sharing this part of our lives, without oversharing. I can’t believe it’s been 6 months, but then, again, I can. I reached a point last fall, where I could no longer fake “okay” in public. I had caregiver burnout, compassion burnout, and if I am to be transparent, I had given up on having any sort of joy in my life. I was for lack of a better word picture, sinking…physically, emotionally, and spiritually.
…..and I thought I was okay.
I wasn’t okay. And my best friend and some family members, knew I was on the brink…not of self-destruction, but of losing all hope; of changing from the person who laughed readily, told stories, had hopeful visions, dreams and goals, to one sinking into hopelessness. That’s a dark place, friends, especially for me. I had never experienced so much darkness, for such an extended period of time, in my entire life.
Caregiving for a spouse with young onset dementia, is hard. It’s very hard.
There are a lot of hard things in our lives, but for my experience, because this is the season I’m in, I know mostly about caregiving in this light.
Caregiving for a husband with young onset Alzheimer’s, involves every difficult emotion that I have ever known about.
And while there are memes and quotes and sayings that try to encourage, while in this season, those are like trying to spread a salve on cracked skin that has developed calluses on the edges. They just don’t do any good, in the season.
There is a “copy/paste” post going around on Facebook right now, that is a good example of that for me, right now. It starts with “If I get dementia…” do this. There are some practical suggestions in the post, but it actually hurts to read it, as a caregiver in the throes of watching a spouse deteriorate mentally. Here’s how I would change that post…. I would make one line that said, “If I get dementia, give yourself grace that you may not know what to do.” What the post goes on and on to say is just more pressure for a caregiver. Treat me this way, do this for me, make sure I’m doing this… if I get dementia. It’s hard, it’s hurtful. I have not copied or pasted that post.
In the coming blog posts, I’ll pick up where I left off last year, and share how I pulled myself up out of the pit of caregiver and compassion burn out.
And, I will update where we are in our journey now. It’s not going to be sunshine and rainbows, friends. Some days, I cannot stand the thought of “another day like yesterday.” But, I didn’t start this section of my blog to sugar coat the caregiving experience, or to guilt any readers into feeling like maybe something is wrong with them, if they aren’t grateful for the opportunity to be a caregiver. I have never used coarse language, but I will tell you, caregiving for a spouse who once loved you, who hasn’t recognized you for years, sucks. It just does. But, thankfully, because of my best friend and niece, to start with, I am able to share that I know now I will make it through the tough days, however many there are, and all the tough, shitty decisions and emotions that are part of and also looming in every day. And, I have actually experienced how to find joy, how to reclaim my health, to the best of my time and ability, despite the overwhelm and stress of caregiving for my husband with young or early onset Alzheimer’s.
Thanks for being here.
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
How Writing Helped Me Begin to Cope with Being a Full-time Alzheimer’s Caregiver
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One of the ways I started to turn my mental health around as a caregiver for a husband with early onset Alzheimers, was to start writing.
Read MoreEarly Onset Alzheimer’s is lonely for the caregiver
/One of the things I learned right away, was how lonely it is to be a primary caregiver for a spouse with early onset Alzheimer’s. I’m sure this is true of other diseases too, but this is the disease that I know and write about.
In the last 2 years, I have learned coping skills for being alone when I’m not really alone. He’s always close by, except when he is wandering and trying to get away from the house and me, so you wouldn’t think I’d be so lonely! There are many reasons for this, but if you read earlier entries, you know that the thing that triggered the decision to get my husband tested by a neuropsychologist, is because he believed we were getting divorced. He packed up the pickup, while I was running an errand one day, and on Thanksgiving Day told one of our sons that “didn’t they know, we were divorcing and he was going to Texas.” During the confusing weekend following that declaration, I realized something was really wrong.
And even though he knew after the testing that he was in medium stage of progression for early onset Alzheimer’s, for some reason, he never really got rid of that feeling that I had done something wrong to him.
So, he rarely talks to me. He never touches me, not even a pat on the shoulder. I moved to the guest room on the main floor, because he acted terrified that I would come through our bedroom while he was dressing or I would wake up and he would be sitting up, staring at me, and he would be fully dressed. So I was advised to move to the guest room.
I’ve gotten used to it. I’ve gotten used to the pit of loneliness. And, I don’t write this to elicit feelings of pity. I’ve come to a very clear understanding in my life and know that I will be okay. The only way this disease ends is in death. It doesn’t ever get better, there is not treatment and the drugs have no proven results. The hope with the drug my husband is on, Memantine (Namenda is the generic name) is simply that during the progression, he will be able to function better. So, knowing this, I know that I will be a widow, I just don’t know when.
That may seem blunt, but please understand, this disease has affected our lives for at least 4 years, with 2 years being as I described above and in previous posts. I know, that unless I happen to go first, I will be a widow and maybe will never feel a husband’s arms around me again. It’s very likely, because the stats for widows who spent years caregiving tend towards them staying widows. That’s a hard thing to write and put out into the world. I know I’ll get through it, many women have before me. And, I try not to focus on it, because I am in this terrible, scary holding pattern. The other day, while making an appointment, it dawned on me that I didn’t have someone to hold me when I’m scared or sad or worried. I just have to buck up and deal. It makes the loneliness that much more insidious.
I put on a brave face. I know it is what it is. But, caregiver loneliness while your spouse is in the same room, is something you may also deal with, and if you are in a similar situation, I hope to share in future posts, ways that I have found to get out with people, and ways that I have found to handle loneliness when I can’t be around others.
I know this post is a little mishmash, but I haven’t really written much about this and I only touched the tip of the iceberg. But, that’s enough for now.
Be well, friends.
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
Caregiver - Relationship Grieving
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Relationship grieving as a caregiver for spouse with young onset alzheimer’s is complicated and ever present daily.
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