Sainthood
Looks like my application cannot be filed just yet, because I'm about to whine and complain like crazy. Ha!
The way I interact with my DW is so dramatically different than 4 years ago. I take the blame for everything, I am patient to the point of ridiculousness. I sit and watch tv shows without moving for hours on end when I don't want to. I relax going places as she wanders around making every trip anywhere 3x as long as it would be otherwise. I can't travel, my career is pretty much over at 58, I have no one to talk to at home, and I keep going because I love her so much.
All of that and I asked her this morning why she was moving the laundry and I got back a request for a deep conversation about how impatient I am with her all of the time, which I most certainly am not. It is so damn hard to be doing so much and have it not be enough for my DW. I know it's her failing brain, I know I was exasperated with the wet laundry being moved to the garage for some reason, but sweet Jesus, I can only take so friggin' much.
I've lost nearly everything to this disease and get to eat crap from my DW for all my efforts too. Maybe I'm not really cut out to be a caretaker after all, but I feel like I've been rather remarkable at it thus far, despite my human moments. I keep thinking she's about in Stage 5, but she's hanging in 4 and that means I have so many years ahead of me. I dread every minute ahead right now.
Ok. Whine over.
Comments
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You're not whining and you're not alone with these feelings. I often wish my DH could understand how much I am doing for him, how much my life and future have changed. It's just not possible for him — or, really, for other people who have not gone through it. Keep coming back here, where you can be surrounded by people who get it. And go easy on yourself. No one is cut out for this.
6 -
Cindy, the irrational nature of the activities is what drives us all crazy. And supervising them is exhausting. You get to a point where you have to have help, or opt for placement to simplify her environment (she will still move things, but it won’t be wet laundry). Sounds like you’re there.
2 -
Bum—
We get it.
Whenever I was/am exasperated and exhausted from my parents' antics (sometimes the non-dementia one was/is the more unreasonable of the pair), my dear friend— the product of 12 years of Roman Catholic education— reminds me, half-kidding) that I am earning diamonds for my heavenly tiara. You're gonna need a neck brace.
HB7 -
I definitely think it's time to hire some extra help. Like so many of us, I'm doing everything and I think I have reached my limit.
2 -
OMG. A neck brace. I love it! ;-)
0 -
Hi CindyBum,
Please vent to us. It will help you - we are listening (reading) and we get it. My sister tells me that I am going to get alot of crowns in heaven. I told her that I wanted mine right now (lol).
3 -
CindyBum. You are SO not alone. The creativity of a somewhat disconnected brain is remarkable. There is no rationality. I do have to leave an interval of time, say half an hour, to put things back where they should be, to rearrange something he has just 'fixed,' or he is insulted and can get angry. But once he has forgotten, I can take shoes off the dining room table, fruit pits off the furniture, silverware out of the sock drawer, dirty laundry out of the bedroom, cracker crumbs out of the magazine stack, etc. Sometimes I do stretches and exercises while I wait for him to get dressed, or something.. Our TV has broken, and I am reading more. He likes sorting old photos. He seems happier without hearing conversation he cannot understand. Life throws strange curve balls. Good luck to you.
6 -
I never thought I'd be a caregiver, with the exception of my now adult boys, but here I am caring for my ex-partner 24/7. I've accepted my situation and am thankful for having learned the art of patience. Not that I don't lose it and get frustrated occasionally but I am now able to forgive myself and move on. I've always been a loner so don't miss having people/friends around. Most of my friends were tennis and happy hour peeps. I'll get back to tennis when I can but probably not happy hour as ours lasted several hours! LOL
Cindy, we're so fortunate to have this forum to vent. xo
0 -
Cindy, hang in there! Before placement, there were times when I would go into the bathroom and shut the door and silently scream obscenities…and I don't talk that way! One day when I was by myself in the car I sat at a stoplight and screamed. You're human and we humans get tired and frustrated even with the ones we love the most. Sending hugs.
Brenda
3 -
My DH is in the same boat and I feel the same as you, good to know I am not alone in this journey through this awful disease. Mine has begun wandering this week because he can’t find his car keys, starting to really wonder how much I can take. Thank you for sharing.
1 -
My suggestion: stop asking her questions (why are you moving the laundry?). Whatever answer she would give will make sense only to her. Why set yourself up to be frustrated? Can she do some failure-free activities, tasks that don't make a difference if they're not done right?
Iris
5 -
we understand totally. Before my DH went into memory care I had stopped asking or answering questions except for a mumble of uh hum. You can’t reason with someone whose reasoner is broken. Each new behavior is like a gut punch.
4 -
Yes! That is exactly where I went wrong. I will not ask questions like this again. Getting through these humps of new behaviors remains a challenge for me as does getting my feelings unnecessarily hurt by someone with dementia. I still haven't managed to slow down that internal button in me that goes right to hurt. I'm definitely working on it.
She can still sort of do the dishes, so I just stay out of the way for that and then redo the dirty dishes she misses. We're getting closer to her not being able to that either. It's really about slowing me down and letting her do it all wrong and trying to be ok with it. I mean, who really cares if she put a dirty glass back into the cupboard?
I wonder who in the world I'm going to be after all of this. So many new ways of approaching things, many of them happy improvements in who I am. Some I worry I will create a sad, exhausted, floppy doormat of a person at the end.
8 -
I've read that dealing with a person with dementia is like acting in an improv. Whatever the other actor gives you, you have to go with it as if it made sense. :-)
13 -
CindyBum, you may be exhausted, but I don't think of you as a sad, floppy doormat of a person. Crushed used to proclaim that you are all heroes. You are doing a heroic job! Do what you have to to make things better for yourself.
Iris
3 -
Cindybum, I can so relate to what you're feeling. I too do everything and it is not enough…constant criticism and hours long lectures every single day, all day. DH has always had an irate, nasty side but it is on steroids now. I'm 75 and figured I had about 5 yrs left, but now think I'll be lucky to make through 2 or 3. I used to be such a positive person…would always wake up and look forward to the day…now I wake up and just want the day to be over. Really don't look forward to anything anymore.
8 -
Must be a power watching me and my frustrations to have me sign in today after being away a while and find this discussion. I could have written the opening comments and included all of the others. I am 7 years into this nightmare and the condition is worsening. I find myself unable to keep my emotional frustration in check with the same diligence as in the past. The goal is to survive until evening and go to bed for some respite. I do have a care giver a few days each week for 4 hours per visit for companionship for my wife. It allows me to take care of grocery shopping, other errands and the chance to get on here. The wife can no longer join me on errands as she gets to agitated or frightened we have to return home. Same with trying to go to eat anywhere. Have tried so many tricks to sneak her meds to her without any success, nor get her to bathe. I wonder what is the purpose of all this. People say that afterwards all you will have are memories but I am afraid all the good memories will get overshadowed by this nightmare for everyone who knows her. Will we be left with the image of her unkempt hair, those smells, her jibberish, the sudden angry outburst, her panic attacks, etc., etc.. Will they be able to recover from this, put the horrors out of their mind and find a way to get back to the good memories of years ago? Everyone I have advised to review this forum has been shocked. What the "outside" world thinks they know about this condition and life within it is so far from accurate. Not sure how much longer I can hold on before violating my promise to her to keep her at home forever. I don't want to be there when she has to be moved to a facility.
10 -
My DW isn't there yet with the no bathing and high agitation. I can't even imagine how you're still holding on in the face of that. I'm already a wreck without those behaviors.
I just want to say to you, howhale, that it's ok to break that promise. You must take care of yourself and no one here would judge you on that choice. It's one most of us are going to make and will have to make.
Sending you strength.
4 -
None of us are cut-out for this. Hang in there.
H1 -
howhale, although it sounds harsh, I think promises like that are not worth anything. Neither you nor she probably reallzed the implications at the time, and I can almost guarantee that your wife was not such a selfish creature that she would want you to ruin your life in this way. If you need help now, get it.
I looked back at your previous post…have you thought about hospice? Did you pursue medication at all? There are a number of things that might help.
3 -
CindyBum - be gentle with yourself: not a doormat but a willow 😉
3 -
I'm a little worried about you. Please take care of yourself and talk to someone if you're struggling. You're important too.
3 -
Jeanne C…Thanks for your concern…I appreciate it! I am just so tired of dealing with DH at the moment…if I didn't have a little dog who depends on me, I would probably totally freak out. I was a musician for most of my life and turned to art when I could no longer handle his jealousy of my time devoted to music. Now I am having to give up painting because he sees it as the root cause of just about every problem that he has. Unless I can somehow find the energy to stay awake and paint after he has gone to bed it is just too stressful. No children, close family or friends so basically no way to escape. Sorry for the rant…I am just beside myself!
4 -
This post and all the comments came to me at such an appropriate time. I was just thinking today about being a doormat by giving in and apologizing to DH time after time each day. There are so many little things you do each day to keep the calm and get through the day. I can hardly even make a phone call - he just commands attention all the time. We all deal with it differently but we all have those days where we want to whine and cry and have someone give us a big hug and say they understand what you’re going through. This forum is that hug for me - thank you all for your insightful posts and experiences.
4
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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