Crashing
Oh hey all. It's me…crashing hard again. I wish I had the strength that so many of you show, but I'm just exhausted and so heartbroken.
The holidays were rough…trying to get her medication mixture together to slow the constant motion and get her some sleep at night. I have the sleep part tamed for now, but it seems her daily action has ramped up even more. She's all ready and rested to run around the house tripping and falling over things all day. She literally takes off running off the couch and if I get her out for a walk, I have to hold her up while she leans forward, jogging as fast as she can. Granted, that ain't fast, but I spend it worried as all hell. She's falling more, because she often beats me to a trip location and falls before I can catch her. It's exhausting and my grief at what I can see as her impending death is just washing over me like waves, holding me down in the sand and choking me.
I've struggled through each stage, but trying to watch and follow someone every minute of the day is a stress I never imagined. I also cannot believe I was wondering if DW was in Stage 6 at the beginning of September, when DW had a couple of traits of Tam Cummings Stage 6. By October, she had all of them except for a couple and now she's already showing two characteristics of Stage 7. Will she be gone in two months? Will she hang in there for 2 more years, just running and running and tripping and falling?
My DW's friend since they were 12 also finally came for a visit. Three years of trying and she came for two nights and could not handle it at all. This friend was sobbing and ignoring my DW because she couldn't believe how far gone she is. Had she bothered once in the last 5 years to visit my DW, she'd not have been shocked. She got a little better for Day 2, but Jesus. I really forget how overwhelming this is for folks, but still couldn't help but be so disappointed in her and wishing she'd just leave. And, I got to spend her visit taking care of her too, which annoyed the friggin' crap out of me. Ha!
It's so weird. I have more help in lovely caregivers than I've ever had, Hospice is on board, and I'm still crashing hard. Or maybe it's not so weird. My DW is dying before my very eyes and I couldn't hate it more than I do right now.
Comments
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I'm so sorry this is so hard on you, please believe me when I say we are not as strong as we pretend to be. We get a lot of strength right here from each other. You need to be strong for yourself and your DW. When this is over, you will not regret the care you gave your DW. Im glad you have Hospice on board. Maybe you can get away for a few hours and relax. Remembe we are here for you.
Your in my prayers. Hugs Zetta
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So not weird CindyBum I post here, I try, I’m constantly trying, I try so hard I want to just not be here sometimes. I hear you loud and clear I crash each day watching my DH loosing everything before my very eyes. I also have some very helpful carers it doesn’t help the heartache or crashing. I crashed big time yesterday while on a link-up with my lovely psychologist. The Weight of Waiting by PattiRN2 pinned on my fridge, the pain of watching, the sadness of what was and what is lost, the past friends or relatives that have no understanding and choose not to hold out a friendly hand because it’s too confronting and cannot find the compassion is unbearable. I am with you all the way.
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I think you are stronger then you realize. You are doing all the work, living with the endless grief, and not getting enough rest. Physical, mental and emotional overload and still able to keep going through it all. Take a deep breath and be proud of the care you are giving.
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Oh @CindyBum
I am so very sorry you find yourself in this predicament. I can see this is on the horizon for me - DH seems to be a solid late stage 5 right now.
Can hospice help with meds for your DWs hyperactivity? Maybe there’s something that can at least moderate the constant motion.
I think the fall risk is going to be with her as long as she is ambulatory. And I wonder if there are any activities she would like while sitting - puzzles, word searches, coloring, folding clothes? You’d probably have to sit with her and keep her focused, but at least you are not running after her and trying to prevent or break a fall.
Prayers and hugs to you 💝
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Can you get her in respite care fore a couple of days to give yourself a breather? Ask hospice about it. You need one.
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CindyBum, my heart is breaking for you. I have no wisdom to share with you, as I am trailing far behind you on this awful journey. Please hang in there. You are a hero to many of us!
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Hi @CindyBum,
And hello to everyone - I'm a brand newbie. My DH is 78 and declining. I'm walking the path that you all are, dealing with unpredictable hostility and paranoia targeted at me... while he holds it together like 'normal' for everyone else. It's rough. He needs me but right now hates me for that. Is anyone else experiencing this?3 -
Such a nightmare for you and your DW. Would she tolerate a wheelchair for outside walks? Hospice could probably provide one. The movement and fresh are good but not if falls are inevitable. So much is a crap shoot. Sorry the friend visit was awful….; you are doing amazing under terrible circumstances.
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Cindy I’m right there with you with my DW. I’ve posted about it. From the minute she wakes up until a few minutes after I give her a temazepam for sleep she is in constant motion. She literally spends 12 to 14 hours on her feet every day. My helper clocked her at 3+ miles in just the 4 hours she was helping. I kind of had it out with hospice yesterday. They’re adding depokate to the mix but I have doubts. I am close to the point of demanding a sedation path. She is suffering and so am I. Maybe I don’t fully understand but I think their job is to work with you on the comfort path you feel is best. I’m almost at the point of telling everyone including the kids to not bother visiting. It’s too hard on everyone.
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Cindy, you and so many others have endured more than I think I could handle and I am in awe of that. When I finally placed DH in MC I couldn’t believe the relief I felt, but I also felt like I gave up on myself as a caregiver. I see the strength you have by reading between the lines when you’re venting your frustration and sadness. This road is amazingly hard but it takes amazing people to get down that road. Hopefully the help you have will make things easier, but it won’t take away those feelings we feel at seeing pieces of our LO disappear slowly. Just know that there is an end to the road and we’re here to listen and give you hugs.🫂
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welcome. Glad you’re here but sorry for the reason. Yes we all experience this. They typically take out their anxiety on their primary caregiver. Him holding it together for others is called “showtiming” and PWD can do so for short periods of time. It takes a lot out of them to do so. They do it in front of doctors, family, friends. Remember it’s the dementia talking, not him. You can’t reason with someone whose reasoner is broken and never argue with someone with dementia. Read the book “The 36 Hour Day” and search online for dementia caregiving videos by Teepa Snow or Tam Cummings. They will help you help him. You are responding to another post. You will get more replies if you create new posts. Click on the plus sign at the bottom right of the page to create a new one. Come here often for info and support or to vent. We understand.
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I’m so sorry for you. Exhaustion is so very real and it affects us just as much mentally and emotionally as physically. Our minds are in constant motion analyzing, processing, directing, redirecting and constantly scanning for danger. You Are A Warrior and Hero💜Lots of hugs💕 and an extra dose of blessings.
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Thank you all so much. What started so hard, ended easier because of your support.
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I have been thinking about the sedation path for a few days now. It's a hard decision to make, but I swear sometimes I can feel my DW vibrating from the sheer amount of energy emanating from her. It's fascinating and a little scary. I asked her yesterday if she could maybe sit down and she answered in utter frustration, "I can't!", so I took her out for a walk/shuffle jog. It seems terrible for her. And, I definitely know that suffering you have. I think of you a bunch, persevere. I know we're on a similar, sucky path.
I've been really happy with my Hospice nurse. I'm going to ask her next week on her visit about that path. I'm so sad, tired, confused, etc., I really need someone like her to help me think it through. I don't want to jump too early out of sheer exhaustion. I also don't want to wait too long with suffering she need not endure.
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I'll take that hug. Thinking of you, dear.
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Cindy, no words of wisdom just know we understand your exhaustion and the grief you must feel in both not knowing how long each stage will last and what it means as you enter stage 7. I am praying there is very soon relief, a plan, and good supports for you both. You are doing your best and that is enough.
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Big hug to you as we walk together, helping hold each other up.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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