I'm tired of cooking/preparing 3 meals a day. It's just the two of us but boy oh boy can that woman eat!! She stays slimish, I get fattish. It's bad enough I do everything here much less start making her one thing and me the other. At times I feel guilty when I buy her fast food cuz of the nutritional value....not to mention I eat it too.
i talked to a friend today at the stone mine . he and his wife just put in a few years of caring for his dad who died with / from c - diff . he cleaned up diarrea till his head nearly blew up , the family didnt help and somehow sly-ed themselves a huge pile of inheritance . he , despite his hardships claims to be 10 times the human being he was before the end of life caregiving . him and i firmly connected on that statement . i dont have money but every day of my life i wonder just how wealthy can one person get in this lifetime ..
i wish i could explain the peace of mind and fulfillment to you but the proper words elude me right now . please hang in there and take my word on this one ..
im enjoying the ongoing story on here right now about the imperfect caregiver . it helps me understand that my shortcomings were normal , i was learning on the job , i overcame the terror , loss of self and anxiety . i fear nothing . whatever the world has to throw at me the door isnt locked , bring it on in here b*tches ..
When my mother gets down and doesn't feel well, I find taking her for a ride somewhere in the country cheers her up a lot. I've learned that if they can't walk with you, just riding somewhere is real treat. I found a nice place nearby where she can sit in the sun and I can walk around a nice pond. Although Mom can be nasty, sarcastic, annoying, etc, etc, she has thanked me for taking the time with her to treat her to such rides. That's something to be grateful for.
i left a very pleasant message for aps today . not argumentive , i wouldnt give them the satisfaction of annoying me but i asked them if we have a make a wish foundation for dying kids , how can they deny edna the permission to go truck riding with her nephew ? 6 months ago at the same facility we were encouraged to go at any time we wished and phys therapy would work around us . im hoping its a qualification for hospice thing and not some kind of childish vendetta out of pia and / or aps ..
edna feels her neurological system degrading almost weekly . sweet , alert , and fun to be with but she is shaking and has little lightheaded spells .
I made it through the day.....though I got a very late start...Brother did not even get here til almost 10:30 so by the time I got on the road I got in rush traffic, and then, wouldn't you know it, got stuck in an almost hour delay because of a highway traffic jam...thankfully no one hurt in that, but didn't get to my destination until the early afternoon, which is when I had planned on leaving there...so already aggravated, I got moving...I was getting rid of the remainder of things while I searched frantically for the picture of my parents and also the one of Mama when she was a young lady...thank God I found them ...both....and then found a lot of things that literally were new...and that I did not want to throw out because we could use them here, but by then had crammed the car full of other stuff...what to do what to do....I did the thing I had vowed I would NEVER do...I ran , got a small storage unit close by...unloaded the car into that and came back and got the things I did not want to chunk....Finally headed home, closing that door for the last time, and very thankful for that...then had a flat tire.....right on the interstate...thank God....when I called the non emergency line for the state troopers office, they directed me to a ASAP roadside assistance program, the man got there in about five minutes, had an entire pit crew on a truck type set up, had that tire off, checked, fixed, refilled, checked and back on the car in maybe ten minutes...would not let me pay him, said it was a state program!!!!! thank God I was on the road again....so long story longer......finally got home...brother had changed Mama several times he said....told me he wasn't a pro at doing it....but he looked worn out...he also mopped the floor and worked on cleaning the house...normally that aggravates me, but I was so glad to get home that it actually felt good to come in and smell the nice clean smell and know he was truly trying to help me, so I'm going to start letting him do it more.....talked to a friend on the way home and have just decided that life is going to be different now...and that is ok....people I thought I knew and could count on I know I cannot...so what...I don't care anymore...and I am done being a doormat....feel kind of numb, but finally having all my home IN one home instead of two places....I don't think I have ever known how it felt to actually live where I was living...always torn between two places...I am going to try this on for size and learn to enjoy it and if people don't like it , toot on them....
maybe sometimes it helps to stretch your thoughts out over a longer span than one day at a time . for instance i heard a girl at NH yesterday use the reference " SSDD " . im thinking if she were 20 yrs older she might be thinking more like " same s*it , different DECADE " ..
i mean that in a positive way . each decade of my life has had some slams -- im beginning to see it as the norm ..
childhood -- nothing but church ( excruciating )
10 - 20 -- broke teen to army life
20 30 -- young dad , young family , rough divorce
30 - 40 -- alcoholism , struggling finances , job burnout
40 - 50 -- divorce ( same woman ) , horrific failed hepc treatments , fledgling business
50 - 55 -- caregiving crept right up on me till moms end of life
55 - ? -- ??? whatta ya got ?? ( chuckle )
goin to work -- SSDD( ecade )
I am also realizing I have some kind of "need" to fix everything...all by myself..and that is one thing that has always gotten me into a lot of trouble...and considerable criticism...I have usually found if I didn't fix it, it didn't get fixed, but maybe I can relax my thoughts a little on what "fixing" something means. It doesn' t have to be perfect...that never ending feeling of needing to be perfect all the time is...WAS...killing me....I'm not perfect, I'll never be perfect, none of us will be...so I'm going to try to stop that and stop expecting it from others cause it isn't going to happen there either..
I had to have a little laugh at my brothers' attempts at the changing of the underpants yesterday...Lord knows he tried...he was finishing up again last night when I got home because he knew I would be tired...and I can't tell you how tired I was and how happy I was he had already done it....this morning when I was bathing and changing Mama, he had used so many of those disposable pads it took a large garbage bag to haul it all out....and her little pants were on in such a way that it actually made me laugh...but he tried....really hard...and I am very appreciative....He also cleaned and polished the hardwood in the living room and it looked really nice and so I made sure he knew I appreciated it....
Back right after I lost my Daddy, 1995, my minister at the time told me during a chat with him where I was trying to figure out why I was so miserable....he said "you will never be home until you are where your heart is "......so.....I am finally home.....my heart is here.....I am here....I am home......
I just don't want to take more time off work running from hearing aid store to hearing aid store knowing it will be a wasted trip. And I am surprised at Dad, because he said he understood nothing could be done. But I guess to appease Mom he went through the phone book and did some calling.... [sign]
Oh my gosh, it's not going to be easy to tell Mom "no", or I could make up a bunch of excuses that next month I am booked solid with my own doctor appointments, etc., which I had been putting off for months on end.
i dont have a fuss today except im not feeling young anymore . got a big stone house coming up and its clear to everyone that im going to need a couple of helpers . b*tches wouldnta a sed that s*it 10 yrs ago .
grrrr
She is also convinced her life insurance policy is trying to steal money from her because I set up auto-pay. She says "Now they're going to have carte blanche to take money from me any time they want!"
Im not feeling young either. I guess I need to curtail my cannon balls for either a bigger pool or just not at all.
This is the most excruciating pain I have ever been in. Pain makes you tired, not fining a comfortable position to sleep just makes life hell! Add mom to the equation, well, I can barely move at the moment. Cant lift my arms but a few inches.... seriously....this is debilitating pain and it needs to go away NOW!!
Still loving moms new caregiver :))) she bathed her, washed all her clothes cleaned her room and bathroom and did her nails....plus takes her walks and reads her stories. I LOVE HER!
We took mom's box spring off her bed and just left the mattress. It sit's very high and she was having a hard time getting in it.... so far so good :))
I can't so this pain for another 6 weeks....makes me nauseous it hurts so bad. Why can't they just give me an epidural or a bunch of numbing shots? sigh
take care all...
His copd issues have reached a plateau where he is holding at certain levels. When Hospice checks him they say he's doing good even though his BP, HR & O2 levels are changing. BP used to be 113/60 and now 135/75, HR was 52 now 65 and O2 was 97 now 90 with 4L of 02 24/7! I suppose he's okay considering he is in end stage copd. Wish I knew how long this will last because I see him dwindling even more every day. He naps at least 3x daily and is only up for about 2 hours at most.
He has forgotten how to use the tv remote, how to make coffee in Mr. Coffee machine or even answer the phone! He is having trouble with his breath when he talks and his voice sounds like a whisper. His left ear he says sounds hollow and he can hear his voice deep inside it. I have all sorts of wax remover, cleaning tools & such but nothing has helped. This too may be a part of the shutting down process? I have no clue what to look for and Hospice doesn't offer much info on what to watch for as I have never done this before.....probably never will either!! Well, I will help if kids needs it but no more adults. This is too hard to deal with especially if you have an aversion to medical things. If I didn't mind I would've been a doctor or nurse. Not my type of career at all! Anyhow, not sure if anyone else has had to deal with this constipation thing but any info will help. Or if anyone can give me some insight on End stage COPD and what to watch for and how to help. Dad has ideas he wants to go places but once we go he is only good for about 1/2 hour if he rides those carts at store or 15 mins if he has to walk. It's like having a 6' baby that you cant control!! Think I am burning out fast lately and wish I could catch a break but have no backup to help. Hospice doesn't do that so I will have to hire a nurse for him if I wanted to leave for a day or two. Oh well, this too shall pass.
Sallie how is your mom doing?
Cap, getting "stomped" is so accurate!! A soul crushing stomp...Yesterday evening mom was pacing, I asked her what she needed. Her reply, was to "see me dead". Talk about having the wind sucked out of you...whoooosh. She quickly changed it to her wanting to die. It has continued all day today. "why don't you just kill me", "I going for a walk and find a place to die". In and out of the house all day.... is my mom the only one who talks like this? It nauseates me listening to the constant awful....
I've got 2 fractured ribs in my back, just below my shoulder blade... the pain is excruciating, add mom's antic to the mix. oh my god.... Im still managing to feed her 3 squares plus snacks, I managed to get her dressed.... she's complaining because I am not entertaining her all day. I can't... I just can't.
the elders mean it , they just dont bring it up very often for your sake . edna has casually thrown out to me a few times that shed like to just close her eyes and skip the dreaded dying process . this was back when we were country trippin in our little truck and by her admission " having fun " .
edna isnt in pain to this day, she just sees herself like it is -- her life is over .
today she laments on how her vision is just getting dimmer , her digestive system seems to be stalling , she hasnt eaten in two days . siad shed play bingo today but not any more , tried to give me her last two root beers so they wouldnt go to waste, says her decline is daily . she isnt fussing and even chuckles every now and then . shes just sharing her dying stages with me as im the only one with the time to listen . ill be surprised if she lasts a month and it isnt really a sad time to me or her -- just the goodbye thing ..
i see years into the future -- always have . i believe in only a few years in the usa we'll be able to have an advanced directive in place to die on our own terms with assistance . whether we will have the resignation to order it when were ready will have to be seen .
As far as assistive euthanasia is concerned. it is interesting to know that where it is legal and people have the means do not it often choose not to or actually leave it too late to do it themselves.
Capt you and Edna are exceptions to the way most people think. Edna knows where she is going in a very short time you have the maturity and insight to give her an arm to learn on as she slowly makes her way along that winding path. Perhaps because you have lived with the possibility of an early death for so long. I hope Edna is able to make a peaceful exit with you at her side. She will tell you when it is time.
This part is not about US..... yes we are going to miss them, and all that goes with that.... but this is their time.... they may need to say some things, they may need to share their hopes of the other side.... they just need a loving and safe place to let us know how tired they are..... and for us to not take it personal....
I was so blessed to be with my mom.... she was so tired, in so much pain.... her last few minutes, she was so restless.... we got her settled and this look went across her face.... I will never forget it and have never been able to put words on the expression on her face.... bliss just doesn't seem to explain it either.... but what ever she saw, made her the happiest I had ever seen her..... and for all the rough times after her death, I could remember that look on her face and be at peace with still being here missing her......she was ok..... she was tired and it was her turn...
veronica,
my mother was a sunday school teacher for 50 yrs but it was against her beliefs . edna nor mom as they reached the end had any expectations of an afterlife . the end of life is certainly the time to search ones core beliefs i suppose . my mother , in the state of terminal agitation reaxched out for her long deceased brother johnny in her bedroom . she didnt reach out for my deceased dad because her brain was dead until only 70 yr old memories remained . dad wasnt in her life 70 yrs ago ..
supporting a nonbeliever at the end of life is most fascinating as there are no " crutches " ( no offense to believers intended ) . one just worries about their b*stard kids .. you hope your philosophies live on in them . then youve contributed to the betterment of mankind ..
my phsyc doc is a bright girl . she instantly reasoned that edna was doing as much good for me as i am her right now . im figuring out her words more every day .
wood cutting is good therapy but a bit short on intellectual stimulation .
goin ta see my aunt, lonely b*stard son 2014
So the next step - doc decided that Hospice in home is needed.. Wow! This all inside of one month! I'm still managing here with a transport chair, bed rail and raised toilet seat - but it is harder each day for him.
VNA support begins as well as hospice tomorrow... Wish us luck. We are going to need it. We are both going on 91 and have four lovely children, only two live close by and one is still working.. but they are helping all they can.
He is incontinent at night. He is depressed - how could he not be?! And anxious and nervous - can't relax - feels useless and wants to go quickly. He may get his wish..
We are hoping for an Rx or two for the depression and anxiety, now that his condition has worsened. It might help us all. We shall see what the nurse suggests, etc. It's all new to us -? Any suggestions how it will all go down?
Our son-in-law is a Forester near Ft. Wayne and we planted over 200 trees on our four acres 26 years ago, so we are tree people.
I wish someone had warned me about leaves in the gutter and all over the 'lawn' and broken branches here and there and everywhere as these trees grow older. LOL - like I should have known, right? We have lots of fun once the 'burn piles' grow large enough and we can have bon fires for the grandkids! 'Have not been warned about burning - the eastern edge of the county it is OK I guess, since all the neighbors have a lot of branches and sometimes logs when a tree will die, etc.