The Train Rumbles On

ghphotog · February 18

Since I placed my DW in MC two days ago I've realized just how strong the bubble of stress we live in day and day out, year after year is. We are always under stress with no escape from it. It almost becomes background noise. It's always there but we are so used to it that it's like living next to the railroad tracks. At first the sound of the train rumbling by and the horn are deafening but after a few years you still hear it but you've become so accustomed to it and preoccupied with caregiving that it's just background noise but it's always there destroying the body.

The train still rumbles by shaking the ground, the walls, the foundations, still doing it's damage but it's not until you move away that you realize how loud it's been for so long.

The early days of this disease as I saw it coming stressed me out beyond belief but after 6-8 years of this disease you almost become numb to it because you just don't have time to acknowedge it anymore because every waking and even non-waking moment is held captive with caregiving. Even at night, when my DW would wake up I was awake to make sure she was ok, didn't need changing and most nights she did and so did the bed sheets. I rarely was able to sleep through the night.

Now, in the evening, the silence here at home is deafening. I understand the phrase that "silence is deafening". All I hear is the ringing in my own ears now. I love the silence however. It's been a long time since I've been able to just acknowledge the quietness but it also makes me acknowledge the stress I've felt over the years.

It's not over for me and more stress is just around the corner as I worry about her and as the disease progresses I know that will lead to more worry and stress. My stress now is financial as within a year or two at the most our retirement savings will be evaporated and that year or two will be here much quicker than I want to think about.

There is no escape from this disease until it's completely over. They will continue to slide down the rabbit hole as it becomes darker and darker, with no way to get back, until they reach the bottom, then it's over.

Buggytoo · February 18

Sending you my wishes for a gentle walk, a cool breeze, and comfort in the quiet. You make such a good point - and so poignantly - that MC doesn't let us escape from this disease or its destructive effects on our lives.

jfkoc · February 18

Yes, yes and yes.

Thank you for putting it into words....

BPS · February 18

I don't post often but I hope the best for you. I am considering MC for my wife. I have not had to deal with some of the things you did but the stress is like you say always there. I think you are right that even after placement even though there probably is a relief but then new issues come up. I will be interested in hearing how you adjust to being able to come and go when you want. Sometimes I think that I would go out and do as much as I can and sometimes I think being here all the time has become normal to me and maybe I would just stay home with nothing to do. I hope I am wrong about that and that you do get out in the fresh air and find a nice stream to enjoy.

wishing you the best.

spernstein · February 18

This is my first post. I care for my dh at home. You did a beautiful job of capturing the daily continual stress. My best wishes to you as you reclaim a little of your own life. This is such a exhausting and brutally heartbreaking disease. God help us all!

GothicGremlin · February 18

I'm so sorry @ghphotog

My situation is very different from yours - I'm caring for my sister, not my spouse, but I absolutely get the train analogy. It feels exactly like that.

RickM · February 18

That is an excellent description of what it’s like both at home and when LO goes to MC.

I got frustrated with some things at MC last week and started to consider moving her back home, but then I remembered “the train” and having to watch her slide down the rabbit hole 24/7.

I am so sorry. Take care.

WIGO23 · February 18

https://alzconnected.org/discussion/68215/the-train-rumbles-on

WIGO23 · February 18

How eloquently said. Thank you for sharing your experience.

I am at the beginning of the journey as a caregiver and just in one year I am seeing my tolerance for living in this stressful reality is increasing. I find opportunities to “zone out” when my DH is telling me the same news story for the fifth time in two hours. I also try to be grateful he can still follow the news and retell it accurately!

trottingalong · February 18

@ghphotog. Thank you for so eloquently putting into words how it feels being a caregiver for my DH. I think I will save the train analogy in my memory bank to pull out when I try and explain how I’m feeling. I particularly like when you mentioned at night when you would wake up when your DW did, just to make sure all was ok. Every single night that occurs in my house.

WIGO23 · February 18

https://alzconnected.org/discussion/comment/198715#Comment_198715

I am sorry you are on this journey but hopefully you will find some comfort and help here.

Denise1847 · February 19

https://alzconnected.org/discussion/68215/the-train-rumbles-on

So true. I also think the analogy of the frog in water which slowly comes to a boil and the frog just doesn't have a clue because he has been in the pot for so long.

terei · February 19

What I have observed with caregivers is that they end up normalizing the way they are living + what they are experiencing over a period of time. The frog in hot water is a good comparison.

No matter how stressful + bizarre their life becomes, they are unable to see how harmful it is to them to be in their situation 24/7. They lose the ability to objectively see the impacts on their mental + physical health that may be irreversible. Having someone from the outside to observe, analyze + make recommendations(or insights) to the caregiver is sometimes very helpful, but many caregivers live with this so long they are resistant to making decisions that could be advantageous to both the PWD + the caregiver.

I urge caregivers to try to detach a bit + try to look at their situation as if it was someone else’s reality and how they would advise others if they observed it from an outside perspective.

ButterflyWings · February 19

Just as we learn here, "when you meet one PWD, you've met one PWD" that is made even more complex because there are two in the dementia dance, as we all know. So we have to multiply this I guess, by the fact that "when you meet one PWD CG (caregiver), you've met one PWD CG".

What works for me will not work for others necessarily, I know. It is such a beautiful and strong community that we have here, that understands this and does not judge but helps share our best insights, experiences and ideas to use or adapt, or just take note of.

For my MIL I am told she was in her late 70s when FIL got to probably mid-stage and became too aggressive for her to handle. The family placed him in MC and within a couple of weeks she had lost so much weight missing her DH married as a young teen, so they brought him home and coordinated care there until the end.

Little did I know when she told me the stories of losing the love of her life and his (undiagnosed) disease progression, that it was likely hereditary and that she was giving me a glimpse into my own future with her son. The point of my sharing this on this particular thread is that I totally agree it is a runaway train and certain train wreck ahead. No light at the end of this tunnel. Just trying to avoid crashing and burning as best I can, for the both of us each mile that we cover on this rickety track.

But staying with the theme, who remembers that famous Gladys Knight song "Midnight Train to Georgia"? I honor those caregivers who have made the choice for placement. You still care, and still have major roles to play in the day-to-day decisions. As for me, just like my precious MIL its that line from the above song: "I'd rather live in his world, than live without him, in mine". That's the way it is. And I'm OK with that.

Bill_2001 · February 19

Hi ghphotog,

Your story compelled me to respond.

I am both happy and saddened to hear about the recent placement of your dear wife. Happy - that you were able to make such a difficult decision and follow through. And sad - I know this had to be so very heartbreaking and necessary for you to proceed with placement. My heart breaks at the thought; I never realized what people go through when placing a loved one until my wife developed dementia.

"Just put her in a home," well-meaning friends, family, and medical professionals advise. Sure, easy-peasy. No problem to take this sucker punch to the gut. If they only understood.

You stated it so elegantly - the silence is deafening. This is one of the main reasons that I have not placed my wife yet. As tough as caregiving is, how would I get through the night? Would she miss me? Would she awaken at night, scared because I am not there? It rips my heart out. So, she is still here at home with me. Eight years, four months in.

I am also afraid that, as BPS indicated, that I would have all of this newfound freedom, but would just sit at home and do nothing. Placing my wife would (at first) drain all of my motivation to do anything.

Of course, I would place my wife should our health give me no choice. For the moment, I continue to kick the can further down the road.

I do not post here often, as my experience of time (days, weeks, months, years) has been distorted by this horrendous disease. It is as if time has stood still. Every day is the same, and the progression of this disease is so slow that I have effectively pressed the Pause button on my own life.

ImMaggieMae · February 19

ButterflyWings said:

“But staying with the theme, who remembers that famous Gladys Knight song "Midnight Train to Georgia"? I honor those caregivers who have made the choice for placement. You still care, and still have major roles to play in the day-to-day decisions. As for me, just like my precious MIL its that line from the above song: "I'd rather live in his world, than live without him, in mine". That's the way it is. And I'm OK with that.”

Yes, that’s the way it is. I ‘m OK with that too.

Quilting brings calm · February 20

The train rumbles on is an apt description of this disease - whether you are a 24:7 caregiver or not. I think we all often feel like the train ran over us and adjusts its route in order to do so again.

Truthfully the train is still following you / placement just allows you some hours of being in the sleeper car. Your seat on the train will change, but you will still be either a passenger or a person working on the tracks since you will now be her advocate. You just get stops to get out and stretch your legs.

toolbeltexpert · February 22

Ghphotog Very well put. And totally true! Only a caregiver gets it! The sound of silence. Daily saying hello to darkness but not letting it block out the light. Thats what a caregiver has to do, your doing the best you can and thats more than anyone else can do and dont let anyone tell you otherwise

There is a place where the tracks end, and the silence is just as deafening, but there is a peace that the suffering and torture are over.

I learned to breathe at each new challenge and i do have some very fond memories of my dw while she was at the mcf.

Stewart

The Train Rumbles On

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