I pit being a caregiver !

The BBQ Pit
21

elbows, there’s something that needs to be said, and I’m not sure anyone else is going to…

When this is all over and done with, you’re going to feel guilty still. BUT at some point you’re going to start to forget how terrible a trial you’ve all been through. And you’ll forgive both yourself, and her. It will probably take a while after her death -in the case of my family it took a good three years- but eventually you’ll heal, and she’ll be a peace too. So hang in there.

There are so many people who feel just like you do, but the sad thing is that you probably don’t know that any more than we did. Frankly, if someone well off and well organized wanted to do others a good turn, they’d create a network of nationally recognized groups (like AA or Alanon) for caregivers so they could vent their spleen in an emotionally safe environment without having to worry about being attacked for being honest. As the boomers age, there are going to be more and more people who end up in the situation of caregiving for elderly relatives, so it’s a real need.

22

While not a network on the scale or model of AA or Alanon, there are a lot of groups out there for caregiver support, endorsed by the National Family Caregiver Support Program, administered by the US Agency on Aging.

23

I’m going to apologize straight up for not having read any of the other posts besides the OP but here is my $0.02 worth based on the fact that my first wife died of ALS 8 years after being diagnosed and she spent the last 6 months on a feeding tube and doing nothing but constantly bitching out myself and my daughter for the crappy job she felt we were doing.

My suggestions:
[ul]
[li]Make some time for yourself, even if it’s to go out and take a walk and do nothing but swear at the top of your voice (preferably best if you can go to a relatively non-urban area).[/li][li]Find yourself a support group or other group of similar folks who are facing the same situation as you. It is amazing how much stress can be relieved by talking with others who share your situation.[/li][li]Find someone who can you talk to and who will listen and allow you vent on a regular basis (in addition to the previously listed venting)![/li][/ul]
I will also emphasize what little I have noticed others saying and that is get some help (preferably professional)!

24

It’s good to know that they exist, but they need the fuck publicized out of them, then, so everyone who needs them knows they’re out there. You know, with posters everywhere that show something like an unhappy older person and a sad younger person, with a caption that asks “Are you at the end of your rope as a care giver? Speak to people just like you who can relate by joining ______.”

25

Perhaps. I’ve vented a lot in my LJ, but not lately. I feel guilty that although it’s a major portion of my life (and therefore I have every right to blog about it), I shouldn’t have to subject my friends there to it time and again. LIke a broken record, y’know? :wink:

Another only? huge sigh of relief The only difference is that my mom’s a year younger than yours, and has never had a stroke knocks wood. She was recently diagnosed with Parkinson’s, however – quite common in ALZ patients, from what I understand.

If it wasn’t for my husband, I honestly don’t know what I would do. He works from home; ergo, he’s the primary caregiver. Before we married he had volunteered on a ALZ unit at a local NH off and on for a number of years. I’ve become the primary breadwinner as Mom’s ALZ has progressed. I work roughly 50+ hours a week. Sometimes she doesn’t recognize me. I know it’s the disease, but she’s my MOTHER! Don’t get me started…

Heh, my husband says the same thing, except that he emphasizes that if she suddenly died in her sleep, or died from a fall (she’s quite wobbly), or if I let my anger get the better of me (which I don’t foresee – there’s a big difference between venting/screaming and actually doing something), I’d feel doubly guilty and would probably ruminate on it for the rest of my life. Because, you see, nothing is ever enough. You can take pains with helping her feel safe/comfortable/whatever, you can enter her version of reality through a verbal side door, you can spend countless days at doctor’s offices and at the PT and the neuropsychologist’s, and what does it all mean? She’s not going to be cured. She’ll never be the woman and she was. She doesn’t care because she visits la-la land more often than not. It would be one thing if she was my actual child, but she’s not. She’s my mother! She’s not supposed to be like this! I WANT MY MOMMY!!!

I know a lot of caregivers eventually get past this point, whether it’s through spirituality or antidepressants or sheer will of reframing their view, or something else (what, I don’t know). I have yet to find that. Between work and what’s going on around here, I’m a walking zombie. Somebody could smack me with a 2x4 and I probably wouldn’t react. Seriously.

Here is a wonderful place which has helped with some of my other caregiver angst. I only wish the forum was more active, though.

26

All day long I have heard a voice inside me, reminding me…

Compassion for others is only half the lesson of compassion.
Compassion for self ?, A more challenging path, in so many ways.

I’ve also been reminding myself that it’s got to be easier to be me, doing chores, than to be her, lying in that bed.

When I get up tomorrow I will approach the day with no expectation beyond doing my best. It may or may not prove to be enough. Either way, I will go to sleep knowing I did my best which is all anyone can ever give. The important thing is it will be enough for me. An old and familiar exercise I should revisit it seems.

All of your advice has been so heartfelt and really practical. You have empowered me to be more circumspect about things, thank you.

Now for a little practise accepting with equanimity the things I cannot change.

Anybody got any of that to spare?

:slight_smile:

27

…ohh, what’s the name of that poem…“things I cannot change/And this wisdom to know the difference”…??? It’s on the tip of my tongue. I hate that.

I’m right there with you, elbows. We cannot change it. It’s the pain of witnessing what the disease is doing to our LOs [Loved Ones] that’s doing a number on every single caregiver’s mind. I’ve gotten to the point where I can bit my tongue and silently chant this as my mother goes through yet another La-La Land trip. That and “It’s the DISEASE”. It doesn’t quell the anger much, but it must be doing something because I obviously haven’t succumbed to any baser instincts, or else I wouldn’t be here shrug.

My anger stems from leaving a chaotic job only to come home to something equally chaotic. I have no free time, no peace. I sleep fitfully because Mom sometimes wanders at night. It’ll be interesting to see if day care will help matters any, as I’ve requested she attend on my one day off. I must get over feeling cruel and guilty for wanting to take care of myself, but it’s difficult.

…whoops, I didn’t mean to hijack " :smack:

Try to stay “in the present”. In the more difficult times with Mom I’ve discovered that maintaining this Zen-like attitude has done wonders for my psyche afterward. It keeps me from catastrophizing, for one. It forces me to focus on what is going on before me right now, damn anything else going on around me. It keeps my mind from wandering down the darker paths. Mind you, I’m no Zen expert. It takes constant practice, but there is a lot to be said for it.

You’re not alone. Trust me :slight_smile:

28

God grant me the strength to change the things I can
The patience to accept the things I can’t
And the wisdom to know the difference.

Kiz and elbows, you’re doing fine. You just need a place to scream once in a while. I read a book once about a boy who would go out and curse and scream at an old oak tree in the back yard whenever he got mad. It got to be a game with him, to come up with inventive and novel ways of cursing.

You need to find a cursing tree. They’re strong enough to take it.

29

Absolutely no need to apologise. You are in a terribly stressful situation and are entitled to get worked up.
The right thing to do is to let off steam to your fellow carers, not the patient.

All sorts of people find they are carers, from the professionals to the family members. Your releasing of your feelings strikes a chord in every carer, and will undoubtedly help others cope by realising they are not alone.

It’s not pissing. it’s not moaning. It’s a normal understandable reaction and you must not feel guilty. Feel free to vent, and don’t wait 5 years before the next one.

Absolutely - see my first post in this thread.

It is a real pleasure to help a fellow carer.
I don’t usually do this, but if you want to discuss/vent or whatever, you’re very welcome to e-mail me. I’m sure we’ll both be able to help and comfort each other.

30

Have at it. Heck, I might agitate for a sticky so that there is a permanent thread dedicated to this.

I hear you about balance (and it holds for moms or dads of very young kids,too–I was always told to “take time for you”–and all I could think was, HOW?).

Screw balance–life is never balanced except by TV moms who have tons of help.

I say find something for YOU every day. I mean EVERY day. I dont’ care if it’s an hour or two minutes. Light a candle, go for a walk, talk on the phone, write in a journal, pray, have a bit of chocolate, sex–whatever.

I dont’ care what it is–but ONE thing in the day must be yours and yours alone.

EVEN if MIL or Mom has to wait while you do it. YES-WAIT.

I’m a nurse x 20 years. Sometimes the pts need me instantly and sometimes they can wait a bit. Figure that out and follow it. By “a bit” I don’t mean go take a bubble bath when she needs to be cleaned.

What I am getting at is LIMITS. You need to set them (with safety as a factor) and stick with them. You are NOT Julie McCoys–you are caregivers.

I feel for you. It’s damned, fucking hard work–and it IS work. It can also be an honor and a blessing.

But it sounds to me like y’all need to find YOU again–and care for that person as well. One of the principles of nursing is that the nurse takes care of her/himself FIRST, so that they are available to care for others.

Good luck.

31

That’s one of the things they tell mothers on airplanes…if the oxygen masks drop, put yours on FIRST, then you can do the kidlets. They’re not going to suffocate during the extra couple of seconds, and you ensure that you are able to breathe and help them if they need it.

You do no good as a caregiver if you are tense, stressed, and resenting the hell out of your patient. In fact, you may snap and do something horrible. I’m glad you got your sealegs back. Don’t be afraid to vent and scream if you need to, just do it here and not there.

32

I haven’t slep well the past few nights. Mom hasn’t been wandering, thank goodness, but I’m still wound tighter than a watch spring. I find even the more minutely she declines, the more I subconsciously go apeshit.

I wish to hell she’d just die and get it over and done with. But noooo, she comes from hearty peasant stock. She doesn’t have any chronic illnesses other than the ALZ.

She’s restless. “Agitated” is the medical term. You cannot leave her for more than a minute or two by herself because god knows what else she’ll get into. She sits down and automatically gets up. She HAS to be doing SOMETHING at all times. Unfortunately she’s cognizant enough to recognize when you’re placating her. That pisses her off. But you can’t give her anything remotely complicated because she can no longer concentrate. She knows this, and it pisses her off too.

My husband and I don’t have a marriage. We’re a Mom-sitting service. When I get home from work he’s practically bouncing off the walls. He hasn’t been able to do any business-related stuff since before Thanksgiving because of Mom’s agitation. He hasn’t been able to clean up around here because of her either.

I just can’t fucking do it. I can’t fucking do ANYTHING. I can’t stand being around either of them most of the time because they have a better relationship than she and I ever had.

The house is an utter mess.

We don’t socialize. We CAN’T unless we bring Mom with us. Do you know how embarrassing that is? Oh, it’s not that Mom can’t behave herself because she does (ALZ has somehow managed to make her “adorable” in a nice-old-lady way), but I feel like I’m fucking 5 years old again with my MOTHER following me EVERYWHERE. What few friends we had around here are long gone. What few friends Mom had left who were still healthy and alive are long gone. I can’t rememeber the last time the phone rang.

And I’m tired. Yeah, what an understatement. I’m beyond exhausted, beyond sleepy, beyond…hell, I have no frigging idea. But I can’t be tired because THERE’S TOO MUCH CRAP TO DO AROUND HERE.

Sometimes I want to dig myself a hole and hide in it. Maybe if I do that everything will go away. Yeah…who am I kidding? I’d have both Mom and my husband crying for me. What am I, a fucking savior?

We’ve been obliquely discussing “what to do with Mom if…” Mom’s major physical issue is severe stenosis. There’s going to a day when she will no longer be able to walk, or even get out of bed. She’s not a candidate for spinal fusion because of both the ALZ and her genetic blood issues. We won’t be able to keep her here when that happens because I cannot afford to modify the house.

My husband doesn’t want to hear it because he’ll lose his “hero” status in all this. I personally CANNOT WAIT.

He hates that I’m almost sociopathic in venting all this. I have no guilt, no remorse, nothing.

There’s a hell of a lot more I can say, but it’s time to get Mom ready for day care sigh.

33

Oh. a couple of people around her mentioned support groups. I’ve never been to one because the ones in my area are usually held whenever I’m either at work OR recovering from work. LIke who the hell goes to a meeting at 11AM every Monday?*

*[sub] That’s the time the local senior center has its weekly support group meeting. WTF?!?[/sub]

34

Kiz, I wish I had a magic wand to wave. You mentioned you do have outside help…can you get more?

35

Not unless we pay out-of-pocket. The 3 days at the center plus the housekeeping is all Medicare will provide sigh. The housekeeping’s every other week. I thought it was once a week shrug

If we were to let her attend the center 5x/week, it’d cost $55 for each additional session. That’s relatively cheaper than other centers around here – most, if I remember correctly, charge around $80/day. But still. We’re not wealthy by any stretch of the imagination.

Oh, I could definitely pit the financial ramifications of elder care. But perhaps I’ll save that for another thread.

We don’t have a big family, unless you count my husband’s. They want nothing to do with Mom other than inviting her to birthday parties and such. My husband’s grandfather died of ALZ a few years ago…my MIL has admitted more than once that the experience scared her too much to face it again. Of course all the siblings are too busy with their families to help. I wouldn’t ask them anyway.

Magic wand? If you find one, ivylass, llet me know!

36

Then if they won’t donate time, they need to donate money so you and your husband can get more help. You need to have a sit down with them (maybe videotape a day with your MIL, so they can see how hard it is for you?) and tell them it’s time they ponied up. They may not be able to do much, but if each family segment gave you an extra $50 a week, I’m sure that would be a huge help

37

It has taken me quite awhile to reply to this thread because it hits so close to home. My mother has been a diagnosed Parkinson’s patient for a dozen years and I have been her primary caretaker for the past six or seven years. My heart goes out to you, Kiz and elbows. This is not an easy job, and never will be. What you are feeling is very natural. All of the resentment, anger, fear, and guilt just builds and builds sometimes. If it weren’t for the family, community support, and a patient therapist, I would be at the end of my rope too.

Kiz and elbows , You definitely need some respite time. I would take a harder approach with the other relatives first and let them know how this is really affecting you and your husband. I agree with everyone who said that you need to take time just for yourself every day. It may not seem like it is working, at first, but eventually you may be able to actually enjoy yourself. I would also check with your local or state senior advocacy program (in PA we have a statewide Office of the Aging program) and see what is available for emergency respite care. Most agencies will provide for some away time, whether they would place your mother at a local nursing home, or another facility. Truthfully, if either one of you were close to me, I would be there right now, so that you could have some time off.

Feel free to rant away. I scream and cry sometimes here myself. It isn’t just the frustration of dealing with the immediate. It really is hard seeing someone you love, someone you regard as your caretaker, become dependent and weaker. I wish that I had words of wisdom for you, or the power to allow you to visit with the mothers that you knew.

38

My Mom died of cancer. It was pretty rough at the end but what some of you are going through over the long term, makes me greatful it was as short of a illness as it was.

A year or so later I emailed my brother after have a cocktail or three too many for not helping more at the time. I resented having to do so much. His reaction was surprise, he didn’t think being a caregiver was that involved. Meaning, he didn’t realise how bad it was day in day out.

Reach out to family, they genuinely might not know how hard it is and how much help would be appreciated. What I mistook for him not caring was him not knowing.

39

It’s with a very heavy heart I respond now to my OP.

Inside me there lives a superstitious creature, I try not to let it define me, but I still buy amulets and carry charms onto airplanes.

I have never allowed myself to express the unsaid things that filled my OP, in part because I was superstitious that it could get worse. Of course that’s the truth of most caregiving, it WILL worsen. Today, tomorrow, five years from now. But it will.

After another sleepless night, seeing her unexplained discomfort escalate to pain and eventually agony her doctor came in. He told me which meds to steadily up, and the maxs I could go to, over the next week. The pain is unexplained, it seems her paralysed muscles are ever taunt and painful.

This escalating pain, as it was mostly in her affected limbs, the brain could not really vocalize what was wrong. She wasn’t cranky, she was in pain. :smack: I just felt horrible when I figured it out and called in the Dr. I began to raise the meds doses but she was still intermitently in pain.

By this morning (3 days), I had already jacked all the meds to the max, and was giving them to her hours early. But they did little and her pain increased. She was in agony when the caregiver was in. From 6 am till 3 pm, not ten minutes went by that she didn’t cry out for help or relief. I couldn’t do anything but call the Dr again, Friday afternoon. The last few days have been torturous in the extreme.

We have stepped up to a new level of pain meds. And possibly into a new world of pain management. Is that not the hardest part of caregiving? Having to step into the breach and learn it all on the fly. Learn fast and under maximum stress.

3 Tylenol #2’s later, she sleeps, but fitfully, it’s clear there is still some level of discomfort. I’m just happy she is sleeping. But a few hours ago her moaning and lamenting felt like a knife in my heart, now there’s a med’s induced quiet that seems creepy in it’s stillness.

Maybe it’s the sleep deprivation talking, but again, thanks for listening.

40

Elbows, there is absolutely nothing that I can say that hasn’t been said by other.

But my heart is with you. I’m only posting here to ask if you would find it offensive if we were to pray for you and her?