Travelers to Unimaginable Lands

AlzWife2023 · February 17

Sending best wishes to everyone. It’s two years since I joined this forum and since I’ve given up paid work entirely to care for my DH with Alz. Thinking back and looking at photos, it’s at least 5 years since he’s been certifiably loopy. It took me almost all this time to really get a handle on things & I know things will change. I am blessed and so grateful to God that I have my three children to support me and my DH through his illness. I pray for those of you who do it alone. Please reach out for help wherever you can!

I have turned a corner. Reading Travelers to Unimaginable Lands helped normalize and contextualize all the crazy feelings and doubts that I’ve had about being a caregiver of a PWD.

Today, I attempted a conversation on a single serious topic (I never do this) and my DHs response was so “unimaginable” that it really sealed the deal—no matter how much I care for him, how much I appreciate who he was, he is not just totally dependent, he’s not himself anymore. He’s very ill in the brain/mind. There are parts of him that shine through and that’s wonderful, but he’s a mental case (for lack of a better term) who needs constant supervision, direction, reassurance and coddling. In order to keep things smooth for both of us, I must maintain a very simple reality for him. It’s a full time job and I’m doing it. But there’s freedom in knowing the difference between a relationship and a job.

I recommend this book.

Cheryl11 · February 17

Thank you for this book suggestion. My heart goes out to you. I see my husband change and there is the emotional aspect where miss who he was even a few years ago and the challenges of care and support. I wish you all the best.

Cheryl

AlzWife2023 · February 18

https://alzconnected.org/discussion/comment/236579#Comment_236579

Thank you, Cheryl. It’s a high wire act for sure protecting your health, sanity, and heart while honoring their humanity.

Cheryl11 · February 18

https://alzconnected.org/discussion/comment/236605#Comment_236605

Well said! I appreciate your insight as I navigate this journey.

Biggles · February 18

To Alzwife2023 what an anniversary 2 years on this site, mine is shorter but what a journey we are all on. Not exactly the cruise ship some of my friends go on each year. I was such a mess before I found this site I am so thankful for it. Thank you for the book suggestion it's on my to-get list. I still constantly ask my DH questions that involve a thought process of some kind but of course there is never a correct reply any more so it's more like talking to myself and trying to make up my mind out loud, respectfully trying to include my DH; I was talking to him about a new ceiling fan with a light which one to get and he started to talk about the wastewater from the bathroom WC, definitely as you said loopy! It was The Cavelry's NOT Coming that helped me turn the corner. The realisation that you are on your own for most of this, I am so grateful for the wonderful years my DH and I had together, sometimes we do talk about the past and then it is good. Thankyou for the book suggestion. Take care.

Jgirl57 · February 18

Thanks for the book recommendation. A high wire act indeed

TXGram · February 18

https://alzconnected.org/discussion/comment/236615#Comment_236615

I do understand. I ask my husband questions all the time and as I’m speaking I know I’ll never get an answer. You’re right though, it’s thinking out loud and still including them in our world. Great book by the way. I passed it on to my son but need to get another copy.

wose · February 19

Thank you so much @AlzWife2023 for verbalizing my reality. I been kind of here for 2 years, but hubby hasn’t been right for at least 5. I’m always thinking to myself, why can’t I just accept this. I’m constantly trying to fix and I’m driving myself bonkers. Maybe accepting reality takes longer like you said. I’m all prepared as best as one can be…it’s just the emotional and mental acceptance I’m finding very difficult. It’s like I went through all the legal and safety issues on autopilot and now I’m left with emotional destruction and there’s no one to turn to except hubby, who of course cannot help. Thanks for your insight, it struck a cord and every little itty bit helps 💕💙

AlzWife2023 · February 19

https://alzconnected.org/discussion/comment/236686#Comment_236686

dear @wose it’s a unique (yet common!) situation that we share and it does take time to understand the complexity. I went though the same stages as you, practical stuff first then emotional, and now I’m in acceptance. I have released the grief, for now.
I read about people who still fight with their person or expect them to behave in normal ways, and I wonder if they’re really not able to accept & are blocking out the reality of this unthinkable catastrophe. Accepting the loss of your partner while taking care of them simultaneously is pretty mind bending & heartbreaking.

I’m glad we have each other to lean on & sympathize. Thanks for your message! Be brave! Keep up the good work. ❤️

AlzWife2023 · February 19

@TXGram Yes, I read the cavalry post by Bill a few times over the years until it really hit home. Keep smiling! Keep shinning! You have an important job & remember to take care of yourself, too! 😊

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