White Crane How I've changed/ Things I've learned

White Crane

The thread by Iris about being blunt got me to thinking. When I first came to this forum, I was scared, overwhelmed, and feeling very helpless. DH had been showing signs of dementia for several years before being formally diagnosed and it was wearing on me without me realizing it. When I began reading the posts on the forum, I started to feel more hopeful and also felt so much admiration for each and every caregiver. Some of the things they said didn't really hit home with me at the time though either because I wasn't ready to hear them or because I had not yet experienced them. Now, quite a few years later, I can see their wisdom and also see how I have changed. Here are some of the things I have changed and accomplished since coming to this forum:

Our yard was a mess and I bemoaned the fact that DH would not let me hire someone to take care of it. The backyard had weeds several feet high. You advised me to have it taken care of while I took DH for a ride or shopping. I wasn't ready to act on that at first. It took me awhile to have the courage to act. These days, the yard isn't perfect but it gets mowed and the weeds get taken down every two weeks by a man I hired. DH complains, but it still gets done.

Driving with DH was getting dangerous due to his behavior and the fact that our care did not have some important safety features. In Dec. 2020, I took our fairly new Honda to the dealer and picked out a brand new 2020 model with a lot of safety features that have helped me feel safer and be a safer driver when DH is with me.

I really needed some time away but was too scared and worried about DH reaction to inquire about having a caregiver come in several hours a week. Finally, with your encouragement, I called the local Area Agency On Aging and now get 16 hours a month of respite care. It has taken over a year to find the right caregiver but it has been worth it. I can now go out to lunch with friends every other week and go shopping or to the library or just go take a nap knowing DH is being taken care of for those couple of hours.

Working in the yard was never something I did. DH took care of that. Since coming to this forum, I have bought my own hoe, snow shovel, heavy duty broom, and weed eater. And I can use each of them when needed.

I recently took a five day free care giving course that required a time commitment that was difficult but I managed. This gave me some valuable insights and tools to use in my care giving. And since reading Bills post: "The Cavalry's Not Coming," I have been making any decisions that need to be made. I even went out yesterday and purchased an new chest of drawers that I have wanted for over two years. And I did it without asking DH about it first. It was needed so I did it.

I have visited the two memory care facilities in our area and not know where DH will go if placement becomes necessary.

I've taken complete control of the finances and have also talked to a CELA.

The biggest change though is in my confidence as a care giver and the realization that it is up to me to make the decisions now for both of us. I dearly love my husband and am doing my best to take good care of him as well as to try and maintain some activities of my own and to maintain my own health. I don't always succeed but with God's help and some dear friends like you, I am hanging in. Thank you all for being here.

Brenda

M1

Brenda, that's a brilliant post and a brilliant description of what I was talking about on Iris's thread. We all learn and change at different rates and for different reasons. Sometimes we have to hear things more than once, and figure out how to apply it to our own situation. And it's hard to know which "voice" is going to be the one that resonates--the blunt one, the comforting one, the encouraging one, all of them cumulatively.

Virtual hug. Thank you for being here, too.

Jo C.

Dear Brenda, Thank you! This is a clear and beautifully written message that is deeply enlightening and will touch and help many others; some will write to tell you so, but you also have helped others who do not come to Post, but come to read.

I so remember when you were new to this Board; you have traveled many miles emotionally and independently since then. When I was new, I too was overwhelmed, doubting myself, afraid to make a move, but finding this place and with the greater understanding the supportive Members provided, I was able to evolve and move forward with a few hiccups here and there.

You are very inspirational and I am going to save your writing; it is that important. Coupled with Bill's Thread re, "The Cavalry's Not Coming," they are a veritable genesis of wisdom in regard to living with dementia as a caregiver.

None of us move at the same pace, all of our circumstances are different, but the experiential wisdom contained in your and Bill's writing are priceless and will contribute much to many journey's being traveled.

Thank you again, so very much and for caring so deeply about all of us to share your experiences with us.

J.

Marta

Bravo, Brenda!

Jgirl57

Three cheers for you!! I think new members will benefit from your post . It also made me reflect on how I/things have changed in our house also.

Paris20

White Crane, my story is almost identical to yours. My husband handled all the finances (he was an accounting professor), did the repairs inside and outside the house, and insisted upon driving us wherever we went. He was diagnosed with AD in 2015 and had a paralyzing stroke last year. He is now in a skilled nursing facility. While he was still at home, I started taking over all the tasks that were his responsibility. I realized I should have acted sooner. I corrected his inadvertent mistakes, found reputable repair people to deal with home repairs and outside work. I had feared that I couldn’t do it but I’m now in charge. Once DH was no longer in my care, I started taking better care of myself. I lost my Covid 19 (pounds), had my long overdue knee replacement, and drove hundreds of miles to visit one of my children. What did I learn? I can do this!

Ed1937

Brenda, that is a well written post! Like many others here, I learned just about everything I know from this site. It's really great that there are forums like this where people can learn about dementia, and how to deal with the dark side of it. Thank you for the thread!

RickM

What a great post. Congratulations to you Brenda. You are indeed an inspiration!

Joydean

Thank you Brenda for your post. I can say personally I have grown by being on this site. All the wisdom, knowledge and experience that others have shared have made a great difference in my own life and decisions I have had to make. Thank you!

Another Day

Brenda, I just love you so much for your openness and honesty. Thank you. This one is a printer, I've printed off a few that I just did not want to lose track of, I'm adding your post to my collection because your words are so very important and true also of my situation.

I'm also learning so much and you know what? It feels good to grow! Yep, my DH took care of many things that I'm now "in charge" of. DH is still doing many things, just different from what he used to. There are some things that I am not physically strong enough to do. I wasn't built with man muscle and I still don't have it. B-U-T, there are a few other things that I had never done....because he always did them, and now I know I can do. When he quit doing things, I was at first resentful because I didn't understand what was going on. I suspected for multiple years, maybe dementia/Alzheimer's, but he hadn't been diagnosed and I didn't wander into this site. Well Duh, this is exactly where I belonged and just didn't know it.

Now when something needs addressing, I start trying to figure it out. Pray about it, think about it and ask questions here. So far, so good.

Like you stated about feeling overwhelmed...I was there 100%. This site gave me back me if that makes sense. I'm at the point now of needing someone to come hang out with DH so I can leave and know he'll be safe. If you have time would you expand on how you got that process going?

Thanks in advance, ~ Another Day

mommyandme (m&m)

“Accept and Adjust”, it’s empowering to know that you can do it! I had to get out of my own way to have any successes.

Well done!

GothicGremlin

Brenda - all I can say is "yes!"

I also read Bill's "The Cavalry's Not Coming," and saw the truth there too. In my brain I read it as the cavalry's not coming - you are the cavalry - which is an even scarier thought (at least it is for me). But the result of us being our own cavalry is that we do what you have done - make the decisions that need to be made, do the things that need to be done, all the while trying to make time for ourselves.

Battlebuddy

White Crane, this was a great post. It’s so good to reflect on all the ways this experience has changed us - making us stronger more capable people.

I was very much like you struggling with finances, yard tools and other small wood working / fix it tools.

I too took over the finances and am pretty good at it now. I pay someone to do the yard( I have a double lot) It’s the best check I write every month.

I saved your post am going to make my own list of things I’ve gotten good at managing.

Donr

Brenda, You have really made some great changes.

Don