Struggling to Cope

jackywingfield · March 21

Hi everyone.
I'm 27 years old and two years ago my father was diagnosed with Alzheimer's. Things have been going really smooth. Up until the last few months. He's progressed somewhat quickly and I had a really jarring experience with him yesterday. He's been having conversations with himself which I just let him do, but yesterday he was hallucinating his "girlfriend pulling up and walking up to the door". He even hallucinated her walking past the door and down to our guest house and then got upset when she ignored him. (I think this stems from when my sister lived in the guesthouse and he'd watch her walk there after getting home) It was easy to calm him down and redirect but the whole thing was so jarring and difficult to experience. I can handle the made up stories and confusion, but the hallucinations really just shocked my system to see him going through something so horrible. I'm just not having a good time coping with it at all. We're going to call his neurologist today and see what he suggests, but I know this is symptoms that he's progressing into late stages and there's some major changes about to happen in his life and my families because of it. It's just so brutal and heartwrenching and unfair. I feel guilty even coming to work knowing my poor dad is at home experiencing these things. The guilt and grief is eating me alive. We're going to start looking into a caregiver that can pop by during the day and make sure his needs are being met, but it's just hard for me to come to terms with the fact that my dad is slowly slipping away and losing cognitive function. I'm just not sure how to deal with the grief and witnessing this disease take my dad from me. I could really use some tips on how to find comfort and not feel like you're watching your whole world end. I hate the idea of my dad suffering.

monicashanon · March 21

Hi- I first off want to say I am so sorry to read this. I was drawn into your post as I am also 27 and my father has been experiencing memory issues for the last few years. It has gotten progressively worse the last couple of years. He has not had hallucinations quite like you mentioned, but there are brief moments where he forgets who my mom is, which a very jarring experience. I feel I can really relate to everything you have said and I also have such a difficult time coping with this. My father taught me the important lessons of life and it’s the hardest thing in the universe to watch him struggle daily. He doesn’t seem to be very aware of what is going on around him most of the time. It’s nearly impossible to carry an actual conversation anymore. It breaks my heart and I feel so helpless for him and my mom. All I can say is that I hear you, and you are not alone. This post brought tears to my eyes. I feel your pain. You will be in my thoughts. This is a horrible, rotten disease.

jackywingfield · March 21

https://alzconnected.org/discussion/comment/239002#Comment_239002

It's messed up but it brings me so much comfort knowing someone else is going through this. I sometimes feel like nobody can relate and nobody has ever felt this burden in the history of the world. It just feels very personal that someone so close to me would be forced to endure something so horrible. And it's not one of those things where there's a light at the end of the tunnel. You just need to grasp onto the happy moments when you can, but the bad moments are just SO heavy. It doesn't make sense I can't grasp it. But I do feel a sense of relief knowing someone else feels the same. It almost makes the weight of what I feel not so heavy knowing there's other people carrying it too. You're in my thoughts too!

junglejess · March 22

HEARD. I don’t know if you watch the show the bear but there’s something they say in it and it is this: “heard”. I totally relate. It’s hard being the child of someone going through dementia. My dad died unexpectedly and he kept warning us for years that my mom was having memory issues but we were in denial. I have been going to group support where I live in person and it has been life-changing. I just found out about some that are specifically for children of parents with dementia which I think is going to be even more helpful. I’m by far the youngest person in the support group and most people are the spouses of people living with dementia. It feels very lonely going through it, especially when my Friends all brag about how their parents have all their wits about them and can do everything independently. I don’t know how that is gonna help me to hear about how well their parents are doing. I think they call it schadenfreude. But I can’t compare and all I can do is offer love and support and help make my mom feel at ease. You are not alone.

ARIL · March 23

Thank you for sharing this, and I hope the responses are giving you a sense of comfort and solidarity. I am much older than you, but I did lose my mom when I was 25 (to a different disease), and many of the comments here are so recognizable to me. I often felt that I was totally alone and as if nobody ever had gone through this in the history of the world. And friends my age were either scared of my grief and stayed away or tried to say profound things that left me even more isolated—and irritated.

Even now I find all the commentary about how other people’s 90-year-old relatives are so quick-witted to be really alienating. I think most people are so terrified of the idea of dementia that they imagine that if their parents or grandparents live to be ancient without dementia then that insulates them from ever having it themselves… But the bragging comments are the very definition of unhelpful.

You are right that this disease is horrible and devastating and unfair. I have no sure-fire advice, but I will say that it helps me a little when I remember to look for moments of shared joy or laughter. You are making memories for yourself. (When I was 25, I remember a night my dad and I spent with my mom in the hospital just after she was out of ICU, and even there we had some moments of laughter. Now decades later, I remember that we had a little happiness together, even in such extreme circumstances, only days before her death.)

Now that I am helping my father cope with dementia, I am trying to learn about the disease so I can be understanding, and I am trying to notice when we have good moments of real connection. I know I will be able to cherish these memories later, and seeing that my presence can bring him joy makes me feel that I can still do something important for him…and it makes me think my mom would be glad I am doing what I can.

I feel for you. Take care.

Struggling to Cope

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