Grossed out and need to vent—I just caught Mom using my toothbrush to comb her hair!

play forwarded to group that only produced women play writes, be a while yet.

Yes cat, I felt pet sounded weird, but I didn't know what other word to use and "horsey" seemed doofy. Semantics. I was expressing my sympathy as understand it, of having smaller animals loved and lost in my life, that's why I added "friend"...



Thinking of you Diane it won't be long now and your mom will be at peace. Jen

OH SHOOT, Bob I hit enter too fast.. YOU are in my thoughts and prayers today! Hope your day is embraced by all the love here and in your "home" and you find happy joyful memories to carry you thru this day!!!

Thanks bob! I was gonna hop back on to say I felt bad for being envious of others hope n progress! But now just from ranting it out this morn, feeling better!! Thanks y'all but missed church today will try for eve service or next week, we are just trying a few diff ones every week to see if we find one we like!! church is new, n I kinda forgot it was Sunday AM today, it all blurs together, lol!!!!
Thanks everyone, juju!

Bobbi, hope the anniversary of your Mom's passing, is pleasant memories of good times.
Diane, thanks for checking in, your Mom must have been in the Marine Corp too. Your a great daughter, and your Mom is so lucky to have you with her.

Hey there Juju,
That is exactly what I am talking about. Write On.

Writing or reading about what we are going through even with variations we realize our stories are mostly the same.

Caregiving has the potential to kill us and we subconsciously know that with what our bodies and minds are telling us. We have been left alone to deal with what should Take a Village, ahem, and that's why we're angry and making ourselves sick.

We love our moms, dads and spouses but doing this alone isn't an option anymore. We have learned that it takes three people to care for one Dementia patient and when we ignore that hard learned lesson we get angry and sick and can shorten our lives by years.

This site and its collective threads are many of the journals we are keeping and msdaizy is correct, writing it out is a healing step.

Here are the diaries of lone caregivers struggling to do the impossible.

OK, I took a break from writing for a moment to search for more info about how long it can take to recover from an acute case of 'compassion' and this is what I found:

Please keep in mind that this was written for Professional Caregivers and NOT Family Caregivers.
Pros get to go home at night and have the opportunity to leave it all behind and they find more and more that they CAN'T!

The Family Caregiver is stuck 24/7/365 so whatever the pro is feeling, the family caregiver has it in spades....

The topic is Compassion Fatigue.

Stress: The nonspecific response of the human organism to any demand placed upon it.  
Suffering: A state of severe distress associated with events that threaten the intactness of the person.  
Compassion: Deep awareness of the suffering of another coupled with the wish to relieve it.  
Compassionate Mission:
Any endeavor by individuals, groups of individuals or organizations of alleviate the suffering of others.  
Compassion Fatigue:
1) A state of tension and preoccupation with the individual or cumulative trauma of clients as manifested in one or more ways including re-experiencing the traumatic event, avoidance/numbing of reminders of the event, and persistent arousal.
2) The natural consequence of stress resulting from caring for and helping traumatized or suffering people or animals.
Burnout: a state associated with stress and hassles involved in your vocation.

The writer, Rev. Samuel Wood, made a 'menu of misconceptions':

1. I will “fix” the problem…make everything O.K… save the world…
2.  I am responsible for outcomes.
3.  If I care enough, everything will be O.K.
4.  The sufferer/victim will appreciate everything I do for them.
5. I will have enough resources (time, money, material, skills and training) to fix things.
6. Significant people in my life will support and approve my
absence from our relationship while I invest in this compassionate mission.
7.  I know what I’m getting into.
8.  I can do it alone.
9.  If I’m spiritual enough, I can deal with the stress of working with suffering people.

Here are the 'Phases' that the compassionate caregiver goes through:

The Zealot Phase
The Irritability Phase
The Withdrawal Phase
The Zombie Phase
Pathology vs. Renewal/Maturation

Skipping ahead I found a great statement about Sleep:

Sleep Disruption is a key symptom of Compassion Fatigue.
When a care giver’s sleep pattern is disrupted for an extended period of time, this is a key warning sign that something is wrong. If normal sleep patterns aren’t reestablished, this combined with other symptoms may indicate that the caregiver is developing “Compassion Fatigue”.

Once again, this was written for professionals but most certainly can be applied to all caregivers of all stripes.


Kuli Girl!! So good to see you.

DEEF!!! Hope your shoulder is feeling better.

Jen! What's the news with the play?

Austin! What's going on? What cool things have you been able to do with your new squeeze? That you can talk about...

Diane! Thanks so much for checking in.

Shirley! I have thought about Kid a lot and imagined the amazing world you were able to give him. So sweet.

Hey there Cat!

Everybody! I wonder about Stormy and Connor and Linda and everyone who has spent time here on the Grossed Out thread.

Today is the anniversary of my mom's death.
Thank you guys again for helping me get this far.

lovbob

oh one more thing...yes i also made a dr's appt. while back 3 months waiting list for low cost healthcare clinic...this should be coming up in June sometime. Maybe some anti depressants will help, not sure what they can do bout all the back neck n arm pain tho...I am not into painkillers they make me vomit! I just saw an add for Cymbalta, a non narcotic P.K., hmmm??? NP just sed last time ice n heat...heck i don't have time for that! I am struggling just to keep us fed n clothed! I read another gals thread about the same as me, alone, she is barely functioning the basics also and cannot find time n energy to "fix or get help with things" Her dr was going to hospitalize her for exhaustion. anyway, she now found a friend to help her thru and prioritize what to do, make lists/goals and help execute them! i was envious That is really what i need, just some physical help getting in the right direction. someone to go thru all this stuff with me (that has been piling up for years)!

And ditto to cattails, praying for you n yours!

good morning to all! Thanks for being there!
I just have this repeating thought this morning about what Bob has said.... "This just isn't right" I am tempted to structure a letter to invite our local officials, and President for that matter, to spend a weekend reading on this site! Read thru and feel the pain. Learn the reality of the "System" they control!! As my story is a mess, there are so many others that I feel for, i mean truly feel their pain. Would they? would they get it? Or is it just because I live the pain?

Kinda what i was sayin bout the ocean earlier, as i am writing I suddenly realized some here may have not ever seen the ocean. I really feel so connected here but then almost shockingly realize we are so far apart!!! what and who we wake up to, landscape and weather etc... is so diff from others! "It's an amazingly small big world"! anyway, my mind wanders sometimes in such a quiet home!! lol!!
You know i come to think, at this point, my main issue with socializing is I am so damn tired all the time, especially now she wheelchair bound! I just don't have the energy to get us or me ready and out. it is a lot of work, I seriously sometimes just don't have the energy get ready and be smiley fun again... I felt such relief b4 we went away, i FELT my smile back again. our first stop to a little bead shop enroute, the woman sed as i entered "OMG, now that is a smile"!!! Made me remember the old me..B4 mom n dad, when i was a working girl. Everyone around me used to say how smiley i was, how i looked so happy all the time. I am tired and angry now and it shows..... I will keep venting and working and I will get back there. I loved how that felt, and when mom noticed my smile last week! she deserves to see a happy face.
Ms daisy i think a journal is an excellent idea, if i can keep it going, i cant seem to do much lately but i think that really helps, i want my smile back!

Got a pile of dishes n laundry and a catbox calling me, and ma is hungry! Hope you all have a great long holiday weekend, we had ours last week!!!
oh good grief one thought turns into a page, sorry!!
Love to you all...juju

Thanks for checking in Diane. Keeping you and your mom in my prayers. Big hugs to you. Love, Cat.

Hi Y'all,

Mom is one tough old girl!!!!! She is still with me this morning :) At least she is breathing easier today though her BP is down to 50/40. I will continue to sit with her until she is ready. I am very greatful for the love and support received from everyone.
For anyone that wants to know more information about what to expect when someone is dying in addition to the books Bobbie mentioned you can search "dying stages" or "end of life" and you will get several sites that will give similar information.

Shirley, I am so sorry you lost your dear friend Kid. Big hugs to you.

I'll try check-in soon again. Love to you all.

Juju, I shouldn't have told you not to stress about leaving your Mom alone. That was dumb of me. There is no way your not going to worry about her, but you really need to take care of yourself too.

Juju - I too had no close friends when I was moving towards the end with my dad. If it hadn't been for the wonderful, caring people here, I don't know where I would be now. The fact that it didn't matter what time, day or night, that I needed to vent, there was always someone here. It was almost better than a close friend nearby because I never felt like I was keeping anyone from anything. Take advantage of this - we who understand - and take comfort that even though we have never met or may never meet face to face, in many ways we are closer than any family because we speak the truth to each other, we feel ok with speaking the truth no matter how ugly it may be. I know so well how very difficult this all is, I lived it just as you are now, alone, by myself. None of my friends had done so and now as they go through it continue to say they don't know how I did it. I wouldn't have been able to without the support I had from the caregivers here. Hang in there and keep venting here. Know that you are with those who TRULY understand and will give you support even in your darkest hours. Hugs ~ Kuli

Thanks everyone for the kind words about Kid. I'm dealing with losing Kid, better than losing my husband. I think Sam would be surprised. Bless his heart, he used to tell, me "you need to go ride your horse". And, then there is the fact that Kid passed much quicker, and easier than Sam did. I got to say a proper good bye to Kid, scratch his ears, rub that spot on his neck he just loved. Even though he was not feeling good, he responded to me, pushed his head against my chest. I told him if it was his time to go that I would be alright. I had to go back in the house, and 5 minutes later, my sister came to get me, Kid had just laid down and died. Sam was so stubborn, and hung on fighting to the end (blasted Marine!), the cancer in his brain made him not know what was going on. He was so confused. Funny how a horse accepted the end so much better.
Juju, try to find things to make you laugh. Playing with your animals, watch something funny on TV. Take a walk, and enjoy the sunshine. Try not to stress over leaving your Mom. What ever happens, well, she could fall with you right there. If you could leave her at a Sr daycare for a short time it might be good for both of you. Like Bobbi says, keep writing. This site saved my sanity (well at least I'm not any crazier than I ever was). Love Shirley

Juju,
Sounds like a beginning of a plan.

I think as time goes on more and more organizations, whether they be churches or scouts or whatever will see the need to fill the void of someone needed to assist the family caregiver.
There should be a badge for that! Maybe there is and I have no idea......

I'm not recommending a church for the faith end of it but for the civic end of it where there are people who want to help in their community.
Helping as in actually doing something and not just having meetings talking about doing something. Sometimes they just need a direction and they are ready to jump in. Of course it all depends on individual circumstances of the social organization and the caregiver.

As far as you not being the happiest person to be around, well, that goes with this territory too.
You will find that it will change when you change up your living situation and if it doesn't, looking into anti-depressants might help too if you are not already taking them. Obviously a personal choice.

When I started with my mom I went for about 2.5 or 3 years and then caved and finally got some anti-depressants. I was very resentful about it at first because I recognized it as situational depression and was angry that I had to drug myself to cope but I guess it was a good choice for me because I was able to keep going. Things got easier even though I was in a light fog sometimes and I have no idea whether I would have made the decisions I did if I wasn't on the drugs. Hard to tell and just another facet of how devastating this disease is to everyone in the vicinity.
The main reason we get so sick and mentally devastated is because we know this is wrong on a core level and fighting with our bodies and minds to keep it up makes us literally sick. I had to trick my body and mind to continue but it still made me not well.

If you are afraid of leaving your mom, maybe you can mom-proof the house so she can't start a fire. I have no idea what to do to prevent falls which is why that is the biggest hazard from what I gather from all concerned.

I got to the point where I didn't leave and then we did respite for 10 weeks and then I got someone to be in the house in the last weeks.

Everybody's situation is different and I was very lucky in many aspects compared to many I have read about.

Keep writing! The caregivers on this site and specifically this thread really saved my bacon. I felt a lot better after communicating with the crew!

ok,
lovbob

Well I am working on finding a church and the only "friends" who are willing to come n hang out with mom n I are bout 2 hrs away! but ya I will keep going to the church and try to meet some new people! everyone here seems to be too busy with life to come up here-I suppose I cud try to just get out more for quick coffee or visit with those busy folk I know I haven't been the happiest person to be around lately but hopefully that will change as I take these steps!!! and I fear leaving mom even for hour, she wont wander or fall if set up properly but if a fire should start or ?? she wont know what to do...
ANYWAY AS much fear n despair I have faith to equal it!!! is a challenging job to keep things balanced! !
And no bob, no hospice yet, we did have the home health (virtually same) for 2 months, thru April, while she recovered from her brkn hip n shldlr. They were wonderful and thorough! I found a great deal of comfort in there presence. Almost every weekday someone was here: p/t, o/t, RN, bather, diet/speech, etc,,,, if only an hour, it was great!!!! And I learned a lot from them! I did ask how do I know when it is time for hospice, and she really couldn't tell me much there but left me some material to read about the signs. I have not yet tho....my gut feeling (or denial) tells me we are years away. She still speaks eats and tries to do what is asked of her. she has declined with her eating, I now am having to purify and hand feed more n more ...she hasn't had teeth in 15 ys, and cud eat almost anything, but now she spits it all out if she cant get it down right away. oh ho hum anyway! so THANKS I will check out those books!!

Oh Juju

This is what it's like. You keep looking in to see the covers going up and down to make sure they're breathing. You worry over each and every little thing.

When I was texting with Diane just a few minutes ago, she said that she was second guessing herself which is also normal but crazy making.

I don't remember whether you have called hospice and they are involved because they can bring the caregiver and loved one a lot of peace. I wish I had had hospice involved from the beginning of the end because it would have made my angst easier to bear.

There are a few little pamphlets that I recommend and they are available at b k books dot com.

The Eleventh hour, My Friend I Care, Gone From My Sight and a few others that tell you what to expect as the time comes near. They work to remove some more of that angst that builds up in us when we are faced with the unknown.

This is a lonely and depressing job which is why we are not supposed to go through it alone. Technically we CAN'T do it alone which is why we get sick and crazy when we are left alone to do it.

The best thing I can say is to keep writing, even if you find yourself sitting at your computer and writing writing writing. Someone will be here to answer you so you don't go hours and hours without support.

The other thing is that if you can get another human being to be with you, whether it's a friend, a neighbor, if you are a church goer this is the time for them to step up and not leave you alone. You are not supposed to be alone now and this is for you not for your mom. Your mom has entered her process of leaving and that is her natural state. You are just as important as the one you care for so make some calls to a church or anywhere to get another person to come and sit with YOU!

Anyone else have any ideas for Juju?

lovbob

I am looking around today here at the various tools and articles....does anyone have any good ideas to help with the burnout, like I sed yesterday my biggest battle right now is keeping this despair under control....soon as I am home (from trip) the routine is overwhelming again...doing this alone here, no family/spouse or anyone in the house with me creates fear and anxiety and the solitude is awful...Thank goodness for my petkids or I would be insane already! But seriously looking for ideas to help start my day a different way...other than is today the day? will something happen today....I expect her to be her a long time actually unless something sudden happens so I am slowly torturing myself with this mindset! I did just read it is typical of one to do that, so that makes me feel lil better but I need to become more positive, not let the gloom steal what joys we have left, make each day the best!! Oh how do I do this, show me the way!!! it is such A lonely and depressing job! how do I do this all by myself???

Good Morning Crew,

Hey there Shirley, how are you doing today? I like what Juju said about your sorrow.
It's hard for me to imagine living with someone for 31 years and then poof, they are gone... whether it be human or horse. Ow Ow.

I just texted with Diane and her mom is still hanging on, at times struggling to breathe and then resting comfortably. Hospice had told Diane that this could take as long as a week and I think that was almost a week ago... Angels to everyone.

Our animals are close to us to be sure. I also like what Juju said about them being family with more legs than the rest. Good one.

Got talk with Ted the other day and he is moving forward with his education. He has a great place to live just minutes from the campus and will moving in a few weeks. There is life after caregiving.

Hope all have a good start-of-summer-weekend.

love you guys way more than you'll ever know,

lovbob

Good morning,
Meanwhile...so sorry about losing your beloved Kid! My heart aches for you! May your sorrow though worthy be brief and peace come to you soon!!!

funny I just posted 1 prior to that about my pets and how much they mean to me!!! Our animals are more than just pets. We care for them, feed them, love them, teach them, live with them!! They are very much family, just more legs than the rest!!

Cat~I understand what you are saying. It really does not matter how big or small or the breed, a beloved animal that we are attached to, gives so much to us on an unconditional basis that we don't always get from the people in our lives. The relationship we develop with the animal is very different than our relationships with people because we share with our pet/animal a bond that we is between us and the pet/animal, plus there are all the memories of how this pet/animal interacted with the rest of the family. I had a cat I put down in 2005, he was 18 years old, my kids grew up with him. My daughter would dress him in baby clothes. He was my baby, yet a different baby than my children were to me. I told him things I didn't tell others and he loved me so unconditionally...yet he loved my husband, my son and my daughter. I always said he would die purring and...he did!! All you had to do was say his name and he start purring. I have had cats throughout my life, but he was such a special cat, I still have dreams from time to time about him.

I appreciate everything everyone has said about Meanwhile's horse, Kid. It seems so odd for a horse to be referred to as a pet. That is just my personal reaction. I know every animal that we love and care for is a pet, but a horse is so big and it has such a long life. The term pet just seems odd. They can carry us and be so smart like Kid in getting Meanwhile to a safe place after her head injury. Then again, a dog can drag a child from a hazard and some cats will wake you up when a house fire starts. They are our animal companions, our friends; we know them so well and they know us. Losing them carries such an impact on our lives and referring to them as pets seems disrespectful. They are so much more.

I know no one meant any disrespect with the "pet" reference, but it just touched my heart and I realized how much more they were to me. Just wanted to say that, for the ones I have lost and each of you have lost.

Diane: Thinking of you all the time. Saw your post of FB about your sister arriving and your mom seeming to decline more rapidly after seeing her. I'm sure it gave your mom comfort and closure.

Deef: Where the hell are you? Get yourself back here and let us know how you are doing. Doesn't have to be a page, just tell us what is in your heart.

Bobbie: Get the boat ready. You have a few people who could really use some boat time.

Sending love and white light. Cat

Aww, Meanwhile, I am so sorry. Losing a beloved pet is so hard. I am glad you have such happy memories of Kid.

Sorry about loosing your horse. Sounds like he had a good caregiver.
luvCuz

meanwhile i am sorry I understand i hate losing my loved-pet friends...horses are so beautiful and strong and sweet...

Oh, Shirley: I'm so sorry to hear about Kid. A dear friend of mine just lost her old horse a week ago. It's so sad. They have shared so much history with us and they are always there for us.

I'm sure Kid is with Sam now, healthy and running with the wind.

Love you, Cat

My old horse would have been 31 years old tomorrow, but this morning he just laid down and died. Cried my eyes out. I know it is for the best, 31 is getting up there for a horse. A friend came over with a tractor and buried him out in the pasture. Even rolled a big rock over to mark the spot. His name was Hanta Yo, which is Souix for "Clear the Way". But, we always called him Kid. He was forever stealing things from people's pockets, handkerchiefs, a pair of pliers, gloves, whatever he could get a hold of (your hat). Then he would run off with it and try to get you to chase him. He would eat anything I was eating. Once stole half of my ham sandwich. We took a bad fall on a trailride years ago, Kid slipped on a rock, landed on my leg, and I hit my head on a rock. He didn't run off, but let me get back on, which I barely remember, and took us not back to camp which was 7 miles back, but went about 2 miles to a check point for the trailride. . I don't remember any of that. He always took care of me. In later years, I would ride a younger horse, and my husband would ride Kid. He still loved to go until last summer. The weird part, though. The night my husband died, I was sick as a dog, throwing up and running to the bathroom, and I usually have a cast iron stomach. But, last night was the same thing, throwing up all night. Indio's been hovering and trying to take care of me. Indio, says Sam is up there scratching Kid's ears, and taking him for a ride now.

Agree juju, ya just get so worn out on each other and any time off really helps...and going going gone...fp off to adult day health...don't bring him back...

Yes thank you Jen, don't mean to sound ungrateful...it was a nice time for us both!!!
Having friends son with me for couple days was nice too, just to have back up for once....hand/grab something you forgot..or a glass of water, etc..... I having no one around sure appreciated that simple security of another person , if only 12, he could dial 911 in emergency!! I digress...

Yes it was nice and maybe every other month we should do a couple nites away like that. Only 2-4 hrs to the coast, depending where! OR I can rent a li'l cabin at the lake or on the river n be there less than hour and they are real cheap!
The beaches sure are different up in Oregon, rather than Santa Cruz, ca....our beach I grew up going to just hour away! Very beautiful butt even in the middle of summer it never gets warm enough with the wind, to swim or sunbath. I do miss just baking in the sun at the oceans edge!
The sound of the crashing waves n the birds is the best part tho. It lullaby's one into relaxation mode! I thought about some of you here who have never lived near enough to the ocean to have seen it...wow its a small BIG world!!! But ultimately any day out in the fresh air is a good day!

It was kinda sad tho my beloved companion and fearless watchdog showing her age...she is a lab/sharpie mix we rescued. We got her after being burglarized here, she thwarted another attempt following year. she after only having her for maybe a month or two..i was cleaning bathroom and mom slipped out in livingroom...she stood over her, with an alarming bark, protecting her (from her own two lil 3lb lapdogs) until I got there. I knew right then she was a great dog for us....anyway, she is 12 now and has a hard time getting up, started limping this past year....but she loves her swimming omg...she will swim all day long if you let her, I have to chain her up to rest her. Well she barely swam and gave out on our walks, simply sat/layed down n would go no more...we had to turn around, and she is losing her hair and benign tumors are increasingly developing. I am scared now I will lose her too soon and my 17 year old cat who has been with me thru thick n thin....he getting frail too, craps everywhere...some say put him down but I just can't, he still enjoying life! But honestly feel like a crap cleaning machine sometimes between him and ma...and all of them approaching mortality....ugggghh. its like a hospice house her....
and I guess cause I never had kids I have a special attachment to my petkids!

It so hard to wake up everyday "as I think bob said"...to brace yourself for the inevitable fact that your loved one may not be breathing when you get there... takes a boost of courage every darn day....how do you not let this all get to you!!! I cant let myself become so down again....once trapped in this routine!!!

K sorry for rambling....

Hope everyone has a good day!!

I faxed all my paperwork to fmlasource with our company the first week in may. I never heard from them so I called yesterday since my plan was to go out starting the 27th. They told me they did not receive the health care providers report. Turns out they would not accept me faxing it to them...so I called the dr. yesterday for them to fax it. At work, they had me on the schedule for next week. Today I received info from FMLA saying they needed the health care providers report regarding my serious illness. I called them again today, telling them it is not my illness but my mother's. We got everything corrected and they approved it starting monday for 4 weeks.I don't understand why they didn't contact me sooner, but I'm not going to stress over it.

Flex~sending you hugs and still thinking about you and your mom, prayers for your family!!