Making some changes

Jeanne C.

When I first joined the forum, someone pointed me toward a post by Bill_2001 titled "The Cavalry Is Not Coming." Honestly, I think it may have saved me.

Since then I've taken charge of my life in ways I didn't even know I could. A huge thing I needed to handle was dealing with my DH's hoarding. When I took over finances, I learned that he had 3 storage units FULL of stuff. Today I went through the last of the boxes and once the shredder comes, I will be done with the last unit. I feel like a hundred pound weight has been lifted.

I've been managing everything that comes with having a house, things he used to handle. I changed the lock on our sliding door and fixed the toilet in the master bath (yay YouTube). And I found a reasonable handyman for things I can't do alone. I know it sounds silly, but these were big accomplishments for me.

I was already on the path with a CELA (POAs all done and dusted), but now I'm working through the longterm Medicaid process with them. And starting at the end of this week, I'm taking a break from work. I've been trying to work full time and have blown through fmla since his first hospitalization last September. It's very possible that my job won't be there when I'm finished setting up longterm care for him, but I've decided that I need to be able to focus on him now. First because he needs me. Second, because I need time with him while there are still times he IS him.

I know I have to be the one to handle this. And the next thing that comes up. Please send me positive vibes because frankly I'm terrified.

Ed1937

Jeanne, you are doing a terrific job! None of that sounds silly. I had to learn how to make toast. 😊 OK, that was a little overboard, but I did have to learn a little about cooking. I'm still not very good, but I'm managing. We all had to learn to do things we didn't do before. And yes, youtube can be a lifesaver.

I hope Bill sees this thread because when someone posts something that helps someone else, they can feel a little better. Hats off to Bill!

Jeanne C.

I meant to tag @Bill_2001 because I am truly grateful.

tgeno

Jeanne C. You are doing great! Before getting medical help and her diagnosis, my DW was going on a buying binge for shoes, clothing, books, purses. Now that she's gotten an meds that are working, the binge buying has stopped, and we're working together to get control of the situation. We donated tons of clothing and books, decluttering the house. I've also taken over almost all the finances. Since I've always done all the cooking, that has not been an issue. Since she is early stage AZ, we're still able to do things together. We go to movies, we visit friends, we travel. We're trying to do as much as we can, while we can. So much depends on our attitude as caregivers. We need to stay positive and believe that we can do this for our loved one. It's hard sometimes and not likely to get easier. However, I'm learning as much as I can about this disease and how to be a good caregiver for my wife.

Denise1847

Jeanne,

Congratulations! I used to think I could never handle taking care of the maintenance of the house by myself, but I am now. It is a good feeling. I also was inspired by Bill's post "the calvary is not coming." Wow! you are fighting the good fight and are winning the biggest challenge of your life. Keep going and let us know how you are doing.

toolbeltexpert

Jeane I so get your comment about a hundred pds lifted off, I had gotten to where I would just do one thing and I wrote it down just so I could feel that relief. I am so happy your taking charge and hitting the big things and your right about taking the time while he is still him. I did 3 yrs of that. Simple stuff like eating out even if it was just fast food. 2 yrs of that was in the covid period. We never stopped, we ate out in person never got covid! Trips to the park or waterfalls. You do you girl your doing great. Your post will be a help to alot of folks who needed to hear it is possible to getter done!

GG06

Jeanne-

You go girl! It sounds like you have taken the bull by the horns and are taking charge. As challenging and heart-wrenching as it is to go through this journey, it can also push us to expand our knowledge and skills.

I had planned on going back to work once we got settled-in after our move. But since my husband's diagnosis, have decided to stay home. Like you, I need to take care of him and manage our life and house. And I also want to be with him as much as I can before he fades away.

Joydean

Jeanne you are doing fantastic! You definitely deserve a pat on the back for all you’ve accomplished. I still feel proud of myself for fixing our mower the first time. I had no idea what to do or how to do it. YouTube is a lifesaver. It’s a good feeling when you accomplish something that you have never done before. We never know what we can do until we have to do, and you are a winner 🥇

SDianeL

Wish I had read Bill's post. You are doing great. I also had that "fairy godmother is not coming" moment 18 months ago a few months after my DH's diagnosis. We were traveling full time in our RV when I noticed his memory loss and confusion and his driving was very slow. I knew something was wrong. I made doctor's appointments (which took 6 months), I got the DPOA (thanks to my brother-in-law's recommendation) found us an apartment, moved us in, and sold the RV all on my own. Took charge of his doctor appointments and ordering his meds and recently traded in our car. I can't imagine doing all that and still working. Also can't imagine deciding on when and where for long term care. He's lucky to have you.

Jeanne C.

Thanks everyone. This forum is so supportive.

@Ed1937 we should start a thread for easy meals. I've become the queen of the crockpot.

@tgeno it's comforting to know others have dealt with the hoarding/collecting/binging. Mine was always a bit of a packrat but this was some next level stuff. I hired someone to sell off a lot of the contents. We've made $4k already just on the stereo speakers he had stored!

@toolbeltexpert you just handled a move, right? I know you get it. Heck, we all get it. I so appreciate the validation on taking the time off. It's scary but I realized that I was missing what could be our last adventures together (little things like meals out and walks on the beach).

Seriously, you all are amazing.

JC5

This so sounds like a post I should have made! Thank you! Yes Bills post has helped me time and time again! We are so fortunate to have such wonderful caring honest people in this forum! I too am now the only one managing the home , finances, cleaning cooking daily chores and yes YouTubing how to fix a running toilet, clogged washing machine, side screen door that won’t close, and a clicking burner on my stove!! Just to mention the most recent ones! Part of me feels such accomplishment the other part is angry that I am the one! But at least it’s done. So please know we are here here just as you are for us! Thank you

annie51

I can relate to so much of this. Jeanne, sounds like you're doing great things! My DH was always the type that could fix anything - my mother used to tell me how lucky I was that I had a handy husband (my father was definitely not, although he was wonderful in so many other ways 🙂). But now, DH can't think through a project and can't use many of the tools. It's heartbreaking to see him struggle so much with that. Luckily, I used to watch and help him do a lot of things so I can pick up some of what needs to be done - IF he will let me! I'm learning that you do what you have to do, make more decisions than you ever thought possible, and try to stay as positive as you can.

I love this forum!

Dio

Jeanne, good for you! Go, girl! I'm in the same boat. The other day, I climbed up the ladder to reach a beeping fire alarm that was crying for its battery to be changed. After fumbling to get it dislodged from the ceiling, I didn't know what to do next. After removing the old battery I couldn't fit the new one in place. YouTube came to the rescue. I found a clip that demonstrated how to replace the battery for my first generation model. Voila! I felt such an accomplishment. Oh, these small wins can be so uplifting, at least for a moment...

eaglemom

Good for you. You really get a feeling of accomplishment being able to do some things yourself. And I totally get that sometimes you just have to have someone else help you out. I've used YouTube numerous times to figure things out - its a great teaching tool.

It sounds like you've got things under control. At least as under control as they can be. Great job.

eagle

eaglemom

I hunted down Bills_2001 post so we could all read it again. I think I'll print it off so its not 'lost' again. I do think this has such value and certainly has helped many.

eagle

As promised, I have re-posted this to the new platform so folks could find it.

The Cavalry Is Not Coming

April 1, 2023 marked seven and a half years since my wife’s dementia became obvious, and that I knew for certain that this journey would begin. I had sensed something was “a bit off” before then, but that date stands out as the moment that I knew with certainty. I use the date Oct. 1, 2015 as the beginning of this journey.

I write this today with a light heart, and a feeling of optimism that I have not felt for years. Nothing has changed – my wife is still in the throes of dementia, and I am certainly still an exhausted, burned-out caregiver and fulltime employee. I have not placed my wife in a facility – she is still at home with me, or at the adult day care while I work. As I said, nothing has really changed, save for the continuous downhill progression of this god-awful disease.

Rather than post another hopeless, angry rant filled with strife, I want to share with you how one of my greatest fears has come to pass, and how it is actually a relief. My fear has always been the following:

The Cavalry Is Not Coming.

I have spent many a day frozen in fear of being alone: Afraid of being left emotionally alone, physically alone, and spiritually alone. Alone in feeling my way around in the dark, trying to navigate dementia caregiving as best as I can. Many of us on this board post “virtual cries for help,” and I have done that many, many times. I have gone into this ordeal kicking and screaming, which is a perfectly human and natural reaction to a trauma of this magnitude.

Some measure of peace and calm is found in simply discovering that the Cavalry Is Not Coming.

Family and friends mean well, the medical community cannot do much for a terminal illness, and non-profit organizations do what they can to educate us and mitigate the damage. There is not much anyone can do to help us. We are on our own.

In over seven years, I can only site one time that I had true, respite level help without a pricey invoice arriving afterword. Once, in more than seven years.

In times past, I would have been bitter and angry about this, but I have finally arrived at an important conclusion. I am on my own, and no one is really going to help me. I am no longer bitter about this, as I have finally realized that other people have their own crosses to bear. Odd as it sounds, there is a peace to be had in such a revelation.

In the movie Castaway, Tom Hanks’ character was marooned on an island. At first, he tried to find help: Screaming to see if anyone else was there, spelling HELP on the beach. All to no avail. At some point, he accepted that fact that he would have to fend for himself and got busy with the tasks of survival. He even learned to thrive.

Since I posted last, I have taken on the point of view that “The Cavalry Is Not Coming” to epic levels. My wife’s well-being today, as well as my future life, is completely in my hands now. I am now the King of the Castle, Lord of the Manor, Large and In Charge. Yes, I still have meals to cook, dishes to wash, showers to give, medications to manage, diapers to change, and a fulltime job to boot. Life is busy, difficult, and exhausting. But I have some measure of control, and I can call all the shots. That ugly picture on the wall? Gone. Pizza night again? You bet. Two hundred cookbooks on the shelf? We only need twenty. This house needs to accommodate my needs so that I can best take care of my dear wife in these final times. That means removing tripping hazards, redecorating in a light and happy way, and decluttering to the max.

There is a feeling of relief when you just let go and realize that no one is going to help you. The kids (if you have them) are busy building a life of their own, and friends and family have their own problems to manage. I have lowered my expectations to nearly zero, and it has been very liberating. If you have reached this stage (or passed it), you understand. If you are still frozen, kicking and screaming for help, hang in there. Look around you and remember, The Cavalry Is Not Coming.

That said, continue to utilize services that are available. Keep up those doctor appointments, call the Alzheimer’s hotline (800-272-3900) when you are overwhelmed, grab takeout, call friends and family to talk, or even ask a small favor. Use devices and technology to help you – cameras, cabinet locks, grab bars, the “good” diapers, etc. Make everything as safe and foolproof as possible. Be sure your loved one cannot lock themselves in the bathroom, or that you cannot get locked out of the house. Secure anything hazardous. You are the Safety Inspector now. But do not expect anyone to be there to help you change your loved one’s diaper, make dinner, or wash dishes. Get that mindset that you are on your own and take control of it all. Your loved one can no longer help and can no longer make decisions.

After reading this, take a deep breath, and say “I am on my own, and I am doing the best that I can.” I really hope this makes you feel better. This is a horrible situation to be in, and sometimes realizing that you are on your own is just what you need to hear.

This also means that the decision to place your dear loved one in memory care is yours and yours alone. No one can tell you where you are on this journey, and no one can tell you how exhausted you are. You are on your own, no one is going to help you, The Cavalry Is Not Coming.

Nobody's going to help you, You've just got to stand up alone

And dig in your heels, And see how it feels

To raise a little Hell of your own

---Trooper, Raise a Little Hell (1978)

You're only human, You're gonna have to deal with heartache

Just like a boxer in a title fight, You got to walk in that ring all alone

---Billy Joel, You’re Only Human (1985)

With Love,

Bill_2001