Tell me again why we can’t euthanize? I know there are living wills, but Christ, no one wants to live in agony, especially if there’s no way to get better.
elbows, please know, nothing you said or did brought this on. This is merely a sad progression of the illness. You are doing what you can for her.
You are in my thoughts.
elbows, pain is hard to recognize in people who aren’t fully aware and conversant. Don’t feel guilty. Medical staff miss it all the time. Is she eligible for Hospice (meaning her MD thinks she has 6 months or less to live)? Ask him and if so, contact them. They can usually provide respite care, and are much better at pain relief than most doctors.
kiz, so what would be a good time for the caregiver support group? There isn’t one, is there? I have been involved in trying to set these up several times, and they never work, because caregivers won’t/can’t attend. It is so frustrating to want to help, to have resources that will help, and not be able to, because you can’t get the caregivers to attend. I have sympathy for that, of course, but I also think that for some, attendance would be possible and would be more than worth the hour or so of finding other care. I also know some people can’t attend, and I respect that. Caregiving is incredibly hard (much harder than raising a child, IMHO).
Lord help us!
liveonaplane: I’m a Buddhist girl and am enchanted by all forms of prayer. Please DO pray for us all.
Suddenly, I believe, the end of times is near.
It’s been just an awful few days.
The next few hours may prove the hardest of all.
Time seems to be standing still.
I haven’t any more words…
Go do what you need to do, elbows. We’ll be here.
When the shadows
of this life have gone,
I’ll fly away.
Like a bird
from these prison walls I’ll fly,
I’ll fly away.
Amen.
Then you must know that your coming here and venting your incredibly strong, complex emotions about this huge circumstance in your life has ABSOLUTELY nothing to do with your mother-in-law’s condition. You didn’t create the situation she is living in, and you aren’t responsible for it getting better or worse. You know about grasping and rejecting, right? What are you grasping and rejecting instead of accepting right now?
mentally checking her work schedule
It’s not that I’m against support groups, and I would be willing to attend one, but trying to find one in my area that coincides with my wacky schedule (not to mention relieving my husband’s duties here at home) is fruitless at the moment. I’ve got our social worker trying to find one, and every week I scan the local paper’s listings. There is a support group run by the folks associated with Mom’s day health center; however, once again, it’s not on my day off sigh.
Sundays would’ve been perfect for me, but it’s now my 10-hour day at work.
I’m going to go on a tangent here. Now I understand why families may decide to put their LO [Loved One in caregiving parlance] into assisted living or a NH sooner rather than later. It’s absolutely necessary when the LO reaches the stage where a family caregiver can, in no way, provide 24/7 care. I cannot begin to tell you the number of times I’ve wished that Mom would fall, mentally decline further – anything so that I could ship her to the hospital and just be done with it. Yes, it probably sounds cruel and selfish to some, but it’s part of the dark side of caregiving one likes to admit until s/he’s ready to explode.
I know Mom didn’t ask for this; I know it neither her fault nor mine. Except for her younger brother (died of ALZ back in October), nobody in her family lived long enough to show any symptoms. Would everybody else had had it if they’d lived long enough? Nobody will ever know.
Mom’s of sound enough mind at the moment to know that something’s “wrong with my head”, as she puts it. She’s past the anger/denial stage and alternately goes along with the flow acting silly and sobbing at random moments. She no longer recognizes Dad’s photo on the dining room wall. She recognizes people around the neighborhood but cannot recall their names. Watching her trying to write her name is paralyzing because she tries so hard to put the letters in correct order. It takes her almost an hour to get dressed in that if you hand her an article of clothing, she’ll study it from all sides before realizing what it is. She accepts no help and becomes bristly if you insist on it. Gotta love the stubbornness chuckle. It’s no doubt what’s kept her on this mid-stage plateau for so long.
As for me? Right now I’m in a mellow period in that there hasn’t been any catastrophic reactions or anything that’s made me grit my teeth until they crush. It may change tomorrow, two days from now, next week, but it’ll change and I’ll become all angsty once again.
I think of people in similar situations as elbows. I think of other people I know who’ve taken care of LOs with ALZ and other serious medical issues. I think of my cousin, who, within a week of burying my uncle, found out her mother now has ALZ.
I want to cry because I’m there. I know. I want to help. I can’t. My body and spirit’s just too damn exhausted.
If we could just make it through this night…
I don’t even know what I’m so afraid of.
In the morning bloodwork will be done, the phone will ring with the caseworker scrambling to arrange a pain management/ pallitive care nurses visit. The Dr was in at around 7pm. this evening, pain meds stepped up again.
But tomorrow seems an eternity away just now.
I guess I’m afraid that I have no medical training, (beyond being her primary caregiver), yet here I sit at the helm with a 200ml bottle of liquid codeine and an endless night stretched out before me. I’m nearly certain she hasn’t had enough to get her through the night. I am feeling less than capable. Breakthrough pain could cause another seizure, she’s had 3 today. I can’t describe the horror it was, each time.
My husband is sleeping, I know I have little mentioned him. He’s a real fine man, and he works two jobs to support this effort. This is our system, I do the night shift thing. We never know what tomorrow may hold.
I am grasping at insuring her painfree passage, to exert some control over it, I suppose.
I can accept that she’s going to go. I can’t accept that maybe she’s going to be in pain, or not, maybe depending on what I choose to do. Argh.
The first song on my Christmas CD has been playing in my brain all day…
Just a few more
Weary days and then,
I’ll fly away.
To a land
Where joys will never end,
I’ll fly away.
Elbows, that should not be your decision or your choice. You are not your mum-in-laws medical practitioner and it up to him/her to allow your MIL to pass away as comfortably as she can. It might be your role now though to express to the Doc/s just how much pain she is in so they can facilitate an easier passing. They are not necessarily there in the difficult times when you are, so they might not have a clear understanding of what she is going through…you have to make THAT clear.
And I wish you peace. You have been doing a remarkable job of love and caring and rotten bloody toil. Despite your mum-in-law’s present mental and physical condition, I’m damned sure she knows in the core of her being that you are there helping her every step of her helpless way. She loves you and admires you immensely, just like we do here.
elbows, you sound completely overwhelmed, and it also sounds like you should be, given the circumstances. It also sounds like your mother-in-law needs to be in full-time care at this point - that feeling you have, like you don’t know what to do or how to do it? That’s coming from your intuition that’s trying to get a message through to you - it’s time for your mother-in-law to not be at home any more. This is just my opinion, given from reading a little bit on a message board, but sometimes people too close to a situation need an outside view to get some perspective. Talk to the doctors and nurses - tell them how overwhelmed you are. It’s not a weakness or a failure.
Come to think of it, kiz, I would give you the same advice. You sound like you’re heading for a breakdown of your own.
I’m so sorry you’re experiencing this. I’m sorry your MIL and husband are suffering, too. It’s just not easy on anyone living the situation. Actually, it sucks. I totally sympathize and empathize with your situation. Been there, done that- twice- and have the t-shirts packed in the emotional baggage.
If I may make a suggestion - after this is over ('cause I know you probably feel you don’t have time now), do please see a counselor that specializes in grief. This kind of intense caregiving, with such an inevitable outcome can seriously effect you, akin to post-traumatic stress syndrome.
I sincerely wish you all peace.