I suppose I should add this last update. I don’t want to, but…

My husband passed away June 29th, 2023. I miss kissing him good night and telling him I love him.

Good night my love.

I wrote this to a online support group and received amazing support and encouragement. This is a hard disease, I assume everyone who is a caregiver to someone who has a terminal disease, knows what it’s like, and that they are all hard diseases. I wrote the following at a low point, of which there are many, but there are also good points. I try to remember that. I am sharing this here because of the responses I received, perhaps it will help someone else.

I feel guilty, so I’m posting this in the hopes of understanding. My days are long and lonely, my LO is on hospice and mostly bedridden. He has occasional good days, but mostly he is either asleep or “gone.” The best thing in my life is my dog.  We are without much help and family is a long ways away. So I dream. I dream of the time after he is gone, I’m constantly on the realty websites looking for my perfect little cabin on the beach. I spend my time thinking about what I need to do to sell this place.

I’m not here, valuing these days, I’m as “gone” as my LO. That is why I feel guilty. I know I will miss him when he’s gone, I miss him now. But I can’t live without hope, and right now the only hope I have is my dreamed of little cabin. I just want to sit and watch the waves and not worry about trying to get him to eat, or moving him in his bed, or finding a tv show because he can’t figure out the remote. I also feel guilty because that cabin could never happen except through his looking out for me financially.

I do love him, and I do the best I can to take care of him, I don’t tell him what I think about. I can’t share my hope over a possible future, because he won’t be there. That’s the saddest part. Then there is the guilt. I feel like I’m cheating on him, dreaming dreams he’s not a part of, keeping things from him. Does anyone understand that I need those dreams, because this reality sucks. 

Over a month since I last put anything here. Mostly I’ve been figuring out all the things I need to get done, and how to do the things I need to do. The list keeps getting longer, but something’s are getting done.

As for my LO, it’s hard to say. We had to increase some meds so he would sleep better and decrease others because his blood pressure was low. He still isn’t eating much and now seems to be cutting back on fluids. I don’t think he’s doing it consciously so I try to remind him but it’s not working well. The last couple of days he has been walking with a walker, on his own, but today he said he didn’t think he would be strong enough to do it tomorrow. I’m not sure what causes these mini rallies but I’ve come to understand that they don’t last long, so I try to step back and let him try, and then step up when he needs help. It’s not always easy particularly in the middle of the night.

I saw the first firefly of the season a couple nights ago, it made me smile, and then I wondered if my LO will ever see them again, and it made me sad. The irises, azaleas, and clematis in the yard have all bloomed and faded, he never saw them, stuck in his bed, too tired to look. Every day he wakes up thinking he can walk and then reminds himself he can’t. It’s wearing him down and I can’t fix it.

But he still laughs (groans) at my puns, loves to see his friends, and makes fun of himself.

So we pass the days.

It’s weird! Vaguely surreal. I know that many do not pass within the six month time frame of hospice, and my LO certainly seems like someone who will outlive those six months but nonetheless here we are.

It’s hard to express my feelings. I find myself running around, doing things, and suddenly I’m struck by each hour flying away, and it’s gone forever. 

They brought oxygen for my LO today and I have no idea how to use it, I paid federal taxes today, and then realized I need to pay state also. We have a mouse problem, and my dog has kennel cough. It seems like there are a thousand things I need to do, but things get done when they get done because sometimes I just need to zone out on some stupid game.

Sometimes I’m just tired.

I am, as always, so confused. My LO requested a hospice referral, and it was decided (kinda) that he qualified. So we had a representative come and explain the program, most of which I don’t think he fully understands. I then overheard him tell someone that his doctor referred him to hospice and he had no idea why.

I know from prior conversations (years ago) that what he wants at this point in his decline is hospice, but what he seems to want now is to continue to see his doctors looking for some kind of cure.

Yesterday, for the first time, in probably a month, he got out of bed and went to get his haircut. Then when the physical therapist came he refused to do anything. Understandable he was tired. It’s very hard to know where he is in his decline.

The lady who cuts his hair graciously volunteered to come to the house next time he needs his haircut, and wrote on her appointment card the date of next appointment and “at house.” My LO was right there participating in the conversation. When we got back in the car, he looked at the card, and was surprised she would be coming to the house for his next appointment. I have no idea how much he understands what is going on around him.

So what do I do? Listen to the person he is now, or the person he was then.

So now we talk about Hospice. My LO (LO = loved one) requested a hospice evaluation. We’re not sure if he will qualify, and I’m not sure he understands the ramifications.

For the first time I started crying in front of him, I wish I hadn’t because I need to be strong, but it just hit me that this isn’t “theoretical” anymore. I wish I could just curl up and sleep for a long time, but I can’t. So maybe a bit of depression going on on my part.

I know that if he qualifies for hospice, the word will get out and people will want to visit and that will cheer him. The irony is weird. His friends have moved their Friday coffee meetings to his bedroom, for which I am grateful. It’s good for him and me.

There’s a term I’ve seen floating around lately; anticipatory grief. I never had the term with my son, but I certainly felt it… for years. Now here it is again with my husband. Not exactly an old friend, but someone I’ve known well.

So come on in, anticipatory grief, have a seat, preferably over there in the corner. I will deal with you when I have time, when I’m alone. But right now, the dogs need to go out, and my LO is waking up, and I have errands to run.

One thing this disease is famous for is the fluctuations in abilities both cognitive and physical. So yesterday my LO got up and shaved, allowed me to cut his hair, and ate real food. He was weak and I ended up holding him up while he shaved but it’s the first time in months that he’s paid any attention to his grooming.

I’m not sure what prompted this “awakening” but whatever it was, I’ll take it. It will be interesting to see if it continues.

I wish I knew what to do. I don’t! 

So my LO fell in the bathroom again, somehow he managed to wedge himself between the tub and the commode, and I could not get him up. I know it’s embarrassing for him, but sometimes there are no alternatives but to call 911. 

The physical therapist wanted to know if he wanted to continue pt. He finally agreed but only because Medicare is paying for it. Sometimes his reasoning is suspect. I really don’t know if they are doing any good, he’s been seeing them for about 6 weeks, or maybe 8. In that time he has become much more weak, is now in bed every day, all day, unless using the bathroom, or getting up for them. It’s hard to watch. On a good note he seems to be eating a little better.

I wish I could find something that interests him, but nothing I’ve tried has worked, so I turn on the tv, and he watches the news channel all day.

I can’t fix this, I just need to go with it, and allow what will be.

And now for a completely different line of thought; there is something about his eyes that’s different. It’s like the pupils are more noticeable. They’re not larger, they just seem more black somehow. He has the mask, or blank look associated with the disorder, so maybe that’s why I’m noticing his eyes so much. I don’t know, it’s just somehow his eyes are different.

My LO had to get up last night to use the bathroom, I almost couldn’t do it. The transport wheelchair we have isn’t working, it would be easier for me to have a normal wheelchair, even so, I’m not sure how much longer he could use a wheelchair. So do I invest in a wheelchair? The bathroom is not wheelchair friendly, do I remodel the bathroom?

He was surprised last night that he needed to use the wheelchair, he believed he had been up walking with his cane for the last two days, in reality he hadn’t gotten out of bed for those two days. 

I am dealing with some amount of depression as I watch all this happen. I’ve come to realize some things about myself. I tend to be a “fixer.” I want to fix things for my loved ones and if I can’t, I feel like a failure, and I feel overwhelmed. This has played out so often in my life; with my mother, my son, and now my husband. I need to learn how to support him in his journey, without trying to fix it, or run away, or emotionally withdraw.

I have been watching near-death-experiences (NDE) videos on YouTube, because I wish those experiences for my LO. I hope he sees his daughter and son when he passes, and I hope he feels that all encompassing love. My mother had a NDE, she described it very much the same as those videos. So they give me hope.

Yesterday my LO went to meet a friend for coffee, however it took so long to get him up and dressed that, by the time we got there, his friend had left. So we went and got an ice cream cone instead. He enjoyed being out, it was a pretty day with lots of sunshine and the spring flowers blooming. I wish we could have spent more time out, but he was tired, so we came home and he went back to bed and slept. I want to remember every moment of yesterday, because I don’t know when or if it will happen again. We’ve only gone out for doctor appointments and his meeting with his friend, which is happening less frequently now. It was nice having a little “normal” time with him.

There are moments with him when he shines through the dementia. Little moments of humor. I was helping him to reposition himself in the bed the other day, he asked where I had learned how to do it, I said “YouTube” and he laughed, and I laughed, because it’s true and somehow ridiculous at the same time.

Then there was the time I was helping him find something on Nova to watch, he can’t figure out the remote so I need to help him find things to watch. A tedious task for me because it’s frustrating because his responses are so slow. So I’m reading through the synopsis of Nova episodes, waiting for him to acknowledge one he wants to watch, we come to one titled “Why Bridges Fall Down.” No response, so I move on to the next one, no response, so onto the next one, and then he says “gravity.” It must of taken me half a minute  to figure out what he was responding to, I looked at him and he had that twinkle as he watched me catch up to his joke. Oh, how I love that man.

This whole Lewy Body dementia thing is so confusing. My LO can go from seemingly very competent to incomprehensible in a matter of minutes. His physical problems are also changeable. He hates having me help him walk by walking close to him but I need to do so because he can fall in a instant. When he does stumble and I reach for him, he tells me not to, but my instincts will not allow me to not try to help.

Then there is the whole eating thing. He complains about everything I cook, he always has. At first it really hurt my feelings. I would spend hours cooking things the way he said he liked them, and he would complain, finally I started food delivery services, and he would complain about them. Then he started losing weight and I felt guilty that my cooking was so bad, but then LBD was diagnosed and it started to make some sense. He can’t smell, this is one of the symptoms of LBD. He is also losing his sense of taste, which is highly dependent on smell, but not completely. His appetite in general is also going, he’s not hungry. I think he still blames me for some of this, but not so much anymore. He weighed 183 lbs yesterday, two years ago he weighed 225. It’s hard to watch him not eat, but nothing I offer is ever appealing to him, besides chocolate milk, and chocolate zingers (sort of like chocolate twinkies). He only seems tempted by small amounts of sweet things. It’s hard to shake the guilt that somehow it’s my cooking, and thus my fault.

So it goes. I wonder how long he can survive on how little he eats, but I also am pass the point of nagging. Palliative care is still encouraging him to eat and exercise but while he will do things for them, he won’t for me. I may be wrong but I think he’s beyond what palliative care can offer. I feel guilt for feeling that way but it’s so hard to know what to do.

Last night my LO was running a low fever, I’m not sure why. His constant companion, a Pomeranian we named Renard (because he looks like a little fox) was by his side the whole time. In fact, he is always by his side. That little dog looks at me sometimes with the saddest eyes. He knows something is wrong with his, and my, LO. Perhaps it’s personification on my part, but I swear those eyes are asking me to fix his LO.

My dog, Sam, is 40 lbs of enthusiasm and energy, therefore for the sake of safety for Renard and my LO, I need to keep him separated from them. Sam doesn’t understand why, but accepts it. Sam is my sanity. A lot to put on a dog but he helps me more than I can ever say. He responds to my moods with hugs when I need them and reminds me of the joys of a simple walk. He brings me his toys when he wants to distract me from my problems. Or just sits by me quietly when I need to cry. I think he too understands something is wrong with my husband, he always wants to be in his lap when they’re in the same room but at 40 lbs I can’t allow that, and Renard won’t allow it either. 

I love our puppies, they make life a lot more complicated, but are so worth it. I am so grateful they are sharing our lives. As for the cat, the poor thing has been upstaged by the dogs, but I love her still.

As a caregiver for my LO, there is a overwhelming feeling of anxiety as I look at where we are now and where we are likely to end up. Everywhere I look there are things I need to do, from picking up the dog toys to getting a new roof on the house, but I have precious little energy to get anything done. 

It takes literally hours some days to get my LO out of bed. Yet, since he does spend so much time sleeping, I should be able to get this stuff done, but I don’t, and that’s on me.

I’m not someone who needs a lot of interactions with others, in fact, I’m rather antisocial. I’m just not that comfortable with most people, that being said, I am feeling some loneliness. I miss my husband.