Things I'm learning or learned from this journey

texoma2808 · December 2023

I want to pass on my belated condolences to those who have lost loved ones since I posted last. I'm so sorry for your loss, but so happy for your loved one, who is now at peace.

Fellow warriors, I've been thinking about what I've been learning during this horrible journey, I felt compelled to write some of it down.

I'm learning patience. I've never been a patient person, I'm the type that eats going from chore to chore and sits for 2 minutes and then jumps up to start the next chore. I'm learning that I need to slow down to make sure hubby eats his meals. Sometimes he won't eat without being prompted for each bite, sometimes he won't eat unless I physically feed him. I'm learning that I need to take a breath, tell myself it's ok to just sit and wait for him to chew and swallow.

I'm learning that what he does is not on purpose and I can't get frustrated. I want to jump up and down and scream and yell when he can't or won't swallow his pills or food. Or he can't help moving items from room to room, or dishes from one sink to another, making a mess, even if it takes me 2 days to reorganize.

I've learned that if my carpet isn't vacuumed or I have an inch of dust everywhere, it's ok. No one is judging, no one cares. As long as hubby is clean, healthy and happy and I'm healthy and (sort of) happy, everything is ok today.

I've learned that I can stand more than I ever thought I would. I never thought I'd be able to clean a grown man's rear and the bathroom because of a smelly nasty mess, but I do. In fact, 2 years ago, I said that was going to be one of my breaking points, but I'm not broken and I'm still going. So far, the only thing I still cannot do is handle his dentures with ease, lol, that's my Waterloo today.

So fellow warriors, what have you learned that you can (or can't) do in this journey? Are you surprised by your strength or weakness?

Thanks for reading, take care of yourselves and don't forget to breathe.

Texoma2808

S. Lynch · December 2023

Texoma2808, there is so much I can relate to here. I am both stronger and weaker in this experience. Most days I have peace. I am a retired special and general education teacher and I think some of that background has helped me look at my DH as a child in different phases. Sometimes I have a five year old and sometimes I have a twelve year old. I can never count on who is going to show up when. I need his “supplies” set out and monitored…clothes, wallet, shoes, food and drink, medications…. I never know what will happen each day regardless of the plans we make. It feels like I am working again and by the end of the night I am exhausted and feel such sadness. I miss my husband. I am (usually) disciplined in meditation and prayer finding that I can’t rely on the time of day to do it, but throughout the day there are opportunities. I find that there are moments where I realize I am holding my breath. I have learned to forgive those who were once close, but have become more distant as he progresses. I don’t have any extra energy to spend on anger.

Your LO is further in his journey than my DH, and I try not to get too caught up in what and when my DH will make these transitions. I’ve planned about as much as I can for the days ahead, but know this may mean very little as this disease will run its own course. Thank you for sharing your thoughts and insights.

mpang123 · December 2023

I never knew I would have to take care of both parents with their different levels of dementia until a year ago. Just 2 years ago, my parents decided to give me a car, which I've been without since I stopped driving 30 years ago. But driving again gave me such anxiety. Then, when my parents got Ill and couldn't drive anymore, I became their designated driver and I eventually overcame my anxiety and now I'm more confident. Plus, taking care of them gave me a sense of purpose and I know I'm being appreciated and kept me from my feelings of inadequacy of myself because of my own disabilities. I can really do this! People have given me encouragement of how well I'm managing. I need to give a pat on my back.

charley0419 · December 2023

I’m nowhere where your at yet but this group does give you strength

BPS · December 2023

It is encouraging to see what people are gaining through this in all the losses I feal. There are always gains and personal growth in situations but sometimes we just don't see them.

Thank you

Denise1847 · December 2023

Thank you for starting this conversation. Instead of us focusing on our many losses, it is more productive for us to focus on the gains.

I have learned to let things go. My mantra is "what does it matter." My home is not as clean as it used to be. I have no need to buy things to fill my voids because they just aren't important anymore.

I see the person I used to be who thought life was all happy and good and realize how blessed my life has been. I am full of gratitude for what God has blessed me with through the years. I have learned empathy - I see the suffering around me now. I have learned not to judge. I have learned to reach out and be more supportive to others, even though I don't experience it myself. I feel like a veil has been lifted from my eyes and I see what is important - God, family and relationships. It isn't about one more trip or how many dinners I have with friends, etc.

Most of I have gotten so much closer to God. I have felt like I am in a black pit and felt His presence and hear Him say that He would never leave me. I have felt like I am sinking and heard "just keep your eyes on Me."

We don't learn from the good times. We only learn when we are forced to self-examine through the bad times.

Pat6177 · December 2023

I have learned patience. Like you, I was never very patient and it has been a process but I am a lot more patient now, especially with DH. There are times when he thanks me for my patience, I’ll joke about how I have slowly learned to be patient. I will say that in the earlier stages of this disease, my impatience was from my denial of his dementia. Getting the diagnosis and finding acceptance has helped with my impatience.

Like Denise, the other major change for me has been my faith and my relationship with God. My journey back to my faith and my religion started before DH really was showing many symptoms. But as DH progresses, I find myself turning to God more and being amazed how He is there for me. I am so grateful. I would hate to be on this journey without God’s help.

I'm also becoming more flexible. Recently, DH has been more confused, sometimes he knows me, sometimes not. Sometimes he’s in the midst of a delusion, sometimes not. It’s getting easier to wait till he speaks and then respond accordingly.

I'm still struggling with accepting the long term nature of this disease and not really knowing the timing. DH is mid stage 5. One day at a time.

Jgirl57 · December 2023

I too am learning patience….; I also like the wonderful tips and tricks that are shared here. I have started taking notes for future issues such as layering the bed for nighttime, I put steering wheel locks on our cars and told my HWD/Alz that we are getting a car insurance discount for using them, I pick up latex gloves from the store from time to time and building a supply for when needed. So many things that are not in the books or training videos. Thanks Texoma for starting this thread

ghphotog · December 2023

I've learned I'm much stronger than I thought I was. I'm doing things I thought I would never be able to do.

I am however, not sure how much longer I can do this but I have felt that way so many times over the years and yet here I am... When I saw all of this coming down all I wanted to do was run but I'm not the running type. I could never abandon my DW during the worst moments of her life. I've learned I'm only human but us humans are capable of more than we think.

I've learned that I can be at my wits end over and over but we still carry on one minute and one day at a time.

Thanks for this post!

LindaLouise · December 2023

https://alzconnected.org/discussion/comment/191108#Comment_191108

Thank you so much for this post! Your comment about the veil being lifted and seeing what is important really resonated with me and I so appreciated you putting this into words.

CindyBum · December 2023

I, too, am learning patience. It's a process. Ha!

The bigger one for me is how I've learned to just let things drop that I might have argued with my DW before. To realize I could have done this all along and avoided useless arguments is enlightening, embarrassing that I didn't get that before, and a rather remarkable release of old, unhelpful habits and ways of being.

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