Can I do this…?

SSHarkey · April 10

It’s late here, and I’m tired. I’m currently the major support person for my two older siblings along with my DH with Alzheimer’s. Today has been an all dayer, split between brother and husband. As I’m reading the forum each night after the lights are turned off, I see all you faithful warriors out there, giving it your all, pushing through one excruciating moment after another. And I’m thinking to myself, I’m not sure I can do this. I’m 75 years old with Rheumatoid Disease and Fibromyalgia. I have very little strength left in my hands and I mentally see you all cleaning the floors covered in poop and wrangling your LO into clothes. Just reading it makes me feel sick inside. I can’t. I just can’t. We not there yet. He’s still mobile and has his basic daily skills down. We’re okay for now. But when it’s different, harder, more aggressive. I know it’s over for me. I thought at the beginning I’d keep him home. But we can’t afford 24 hour home care. And I can’t handle nights of constant up and downs. I guess he will still be aware of his environment when I have to place him in a Medicaid funded facility. And I hate that for him. This all just makes me sick inside.

M1 · April 10

I think it's perfectly reasonable to know your limitations. But don't borrow trouble more than you have to.....I think all of us spend a lot of time worrying about things that may never happen. I'm not trying to minimize your concerns though. Similar thinking is why i wish daily that my dear partner would die in her sleep. I wish to spare her the pain.

Quilting brings calm · April 10

I get it. I do. I’m a decade younger than you, but I no longer have the physical strength to do ‘’clean up in aisle 9’ over and over. My back won’t take it.
I'm coming to the conclusion that stress is damaging me physically too. And that’s with mom in an AL.
Let’s cling to @M1’s theory of things not always coming to pass.

SSHarkey · April 10

M1 and Quilting, you’re both right, I know. Every once in a while, I have to tell myself to step back away from “the cliff” and just stay in the moment. I don’t need to borrow any more trouble than I already have. Like you, M1, I’m praying for a quiet and peaceful ending. No fears, no torment, no delusions. I know the Lord will give me the grace to do what is necessary for me to do, and He will direct the future. It’s when I’m so tired and emotionally drained that I get sorrowful. Thank you both for the encouragement. It’s very much appreciated.

Belle · April 10

You aren't alone in those thoughts. I'm 15+ years younger than you and already know that I am going to reach my limit with caregiving. I just hope I am wise enough to move to plan 'B' before this situation becomes too much. In the past 30 years I have dealt with my DH having a chronic illness which included many hospital stays, operations, psychiatric episodes, etc,; then we had a family member get diagnosed with alz and I oversaw their care in a local facilities while DH was in and out of the hospital constantly and I was working full time; and then during that timeframe DH starts having memory issues. My health has taken a hit with all that caregiving. I think you are wise knowing you have limits.

midge333 · April 10

We are not all capable of being caregivers for our loved ones. Do the best you can and be kind to yourself!

mrahope · April 10

I'm feeling pretty tapped out, too, and I'm younger than you with only one PWD to look after. It's ok to say "enough" before you become "collateral damage" , @SSHarkey

SSHarkey · April 10

https://alzconnected.org/discussion/comment/205205#Comment_205205

Thank you, Belle. I had years of caretaking my parents before all this now. My body has definitely felt it all. Stress, the enemy of us all.

SSHarkey · April 10

https://alzconnected.org/discussion/comment/205214#Comment_205214

Oh how many times I’ve told that to others! Funny how it’s different when it’s your own spouse you’re dealing with.

SSHarkey · April 10

https://alzconnected.org/discussion/comment/205224#Comment_205224

I’m believing the damage has hit already. Certainly pushing burnout. I’m going to need to watch my boundaries very closely.

wose · April 10

https://alzconnected.org/discussion/68842/can-i-do-this

I’m so with you too, even tho I’m 66 I feel and look like 90. The physical toll alone is unbearable at times not to mention the unrelenting emotional toll. I too feel like I can’t be in it for the long haul, but at the end of the day I look up and thank whoever it was that got me thru another day. One minute at a time and hope for the best and least damaging outcome 💜

SSHarkey · April 11

https://alzconnected.org/discussion/comment/205263#Comment_205263

Yes. One step, one breath. But we’ve got to find those breaks, or we’ll go down hill fast.

LindaLouise · April 14

So much truth here. We are exhausted, our "boundaries" breached because often there is no one but us to take care our LOs, and we take care because we love them. Even when our boundaries are pushed to the breaking point and we look in the mirror and see the toll on our tired faces, we carry on until we can't. It is up to us to figure out when that point arrives as no one is going to tell us. My adult children have pushed me to consider placement - they don't want to lose both their parents or their children lose two grandparents. I get it - but getting it in my head does not mean my heart gets it. My DH is still my DH and looking at him next to me on the couch and thinking that he will at some point be somewhere else makes me beyond sad. That is our choice, I think - keep on going and risk whatever total exhaustion does to us, or place our LOs and have physical relief, but then deal with the unbearable sadness of our LO being absent from our home. No happy choice here, but choices that will need to be made and the impact of those choices dealt with over time. I sometimes think - What would i want if my DH were in my shoes? That helps me think through these decisions a little, as I know we used to think very similarly about most things.

SDianeL · April 14

https://alzconnected.org/discussion/68842/can-i-do-this

I'm 76 and up until late last year was caring for my DH, diagnosed in 2021. I knew that at some point I would have to place him in care but had planned on keeping him home as long as possible. I knew I would not be physically able to care for him as this terrible disease progressed. It came sooner that I anticipated when I received a devastating diagnosis of aggressive breast cancer. I had to immediately find a facility and place him so I could start chemo. Hardest thing I've ever done in my life. I would start researching now.

SSHarkey · April 15

I’m so sorry! I hope you’re getting the health care you need and that you will be able to rest and recover soon.

SSHarkey · April 15

https://alzconnected.org/discussion/comment/205657#Comment_205657

What a good question! I know my husband couldn’t do what I do. He doesn’t respond well to stress and get discouraged easily. He would place me pretty quickly once I needed physical support. You are right. This helps. Thank you!

Mollykazoo · June 21

I am really deeply feeling your exhaustion and your ANTICIPATED exhaustion and your deep grief.

I am only 53 with a 56 yo DH with early onset and I am bracing myself to pay close attention to my limits as I walk forward and navigate the unknown. For me, the question of whether I will have to place my husband in MC while he's still cognizant has EVERYTHING to do with our kids. The youngest is only 11 and I fear the reality of cleaning up poop and meeting his every need while also, somehow, tuning into my dear adolescent daughter who will surely be needing me as she witnesses this nightmare and also just deals with being a middle schooler!

I really have to remind myself NOT to borrow too much anxiety-driven trouble and to stay in the moment, but I am already seeing how overwhelming this is all bound to become. GULP.

I really support everything I read here about knowing your limits and FORGIVING yourself. You are doing your best. xoxo

CindyBum · June 22

Oh you'all. Your depth of love and thought for your LOs is incredibly moving. I totally know the pain of making these painful and difficult decisions, but when I see all that love you are approaching them with, I know you'll do the best and right thing for your LO and for you.

I have seen it twice now with my DWs parents, who both had dementia. When they placed their father, then their mother, it truly was the right thing for their parents and for the sisters, who were the main caregivers. Nonetheless, very hard to do both times.

xoxo