Empty Nest

Amy moved to a group home on Saturday, December 12. After a week of much back and forth communication with Amy and her caregivers, it looks like Amy is doing well. She preferred staying there for the weekend rather than coming home for a couple of days. I know that is a good sign. I felt a little tug as she told me she didn't want to come home, but my overall feeling was a sigh of relief over her choice.

It is Saturday afternoon and I have plans with a friend for dinner at a new local "wine bar". When she called to invite me, I got that first feeling of freedom with no thought of childcare, so to speak. That felt new--and good.

59 and Life is Fine

Yesterday I turned 59! (whoa) Allison called me after 11pm the nite before and told me she was making the 3+ hour drive to be with me on my birthday. She's in her first semester of grad school and working and very little time to spare. She arrived after five the next day with indian food for dinner, the ingredients to make choc dipped pretzels, presents, and her little baby siamese Charlie. We spent the evening together, me, amy and al doing what we love to do together: eat, talk, laugh, and watch tv. One of my presents is a very large digital picture frame which she had loaded with over 500 family pictures. We sat for a long time watching a slide show of our family history reminiscing and laughing. more tomorrow.

MORTALITY

In the middle of my sleep last night the number 88 popped into my mind and i associated it with an age that i could possible live to. Then i realized that if that was true, I could have more than 30 years left on this earth. It gave me hope. I've been feeling old lately. Old in terms of how close death could be. Even if i could live till 80 i'd have 20 plus years ahead of me. hmmmm.

It's tuesday 8:30 am. Amy is listening to her book. Her goal is to finish it today. My goal is to make a potroast in my new $4 crockpot from Goodwill. I'm putting off browning it and stinking up the house in the morning. Glad I have a house fan to suck out the smell. lucky me.

happy birthday to Pam my sis in law.

For the Record..........

I freeze when i sit down to write. My mind is going all the time worrying, wishing, hoping, fearing.......about the future. About Amy's future. Mine, too, for that matter. I want to write more.

I read Dream Mom a blog by a single mom of a severely disabled son. Her concerns, her son's declining health, the things she goes thru, the energy she has to have..............all of these things put me to shame. I feel a failure and a wimp.

it has been almost a month since Amy returned home from camp. We're still waiting for word from AID that her new home is ready for her. I don't know what i'll do when they say its ready, tho. I'm dreading her leaving for good. I worry how she'll spend her down time. Will she just sit doing nothing wishing for a different life, wishing to be home? Will the caretaker she has accept cheerfully the task she has ahead of her caring physically for Amy? Will anyone pay attention to her hair and clothes and how she looks in public or will she look like one of any of the disabled people i see sometimes and feel bad for? I know I can't take care Amy anymore physically. I haven't been able to since March actually. Helpers come in three times a day. This is a difficult time for me, perhaps for her. She needs a life of her own tho. Her whole day is spent listening to books on tape with meals and short snipptets of time taken for our interacting and being outside together with the dogs. We don't watch tv in the daytime. That's all i have. Must stop.

STILL LABOR DAY WEEKEND

woopeedo its still the weekend.

Labor Day Weekend

Looks like no one reads my posts which is FINE with me. I have no wisdom to impart and i'm certainly no one who's going to inspire. I don't even want that job. So i feel free to say what i want to say. Its a holiday weekend but one day is the same as the next for me and probably Amy, too. We're here living our lives with pretty much no interaction from the outside world except for our helpers and even that gets old. Amy is going to the mall with her previous bus driver today. I hope i can get someone to lift me onto my bed for that time.....................im done. im bummed.

Title to come later

Yesterday we, my daughter, her dad and I visited the training center/workshop where she will be spending most of her week days when she moves to the group home she has chosen to move to this fall. Words fail me at this point because if anyone reads this blog who has a cognitively disabled child, I might offend them. My child is physically and cognitively disabled also but her IQ is at the high end of the spectrum for those served by the Association for Independent Development, the agency providing her housing and day services. Its as if she is the smartest kid in her class, yet the most physically disabled, and for that reason she is the hardest person for whom to find a job.

I held back tears as we walked thru the job center. It does not seem like the right place for someone like amy to be. It is full of retarded adults who look as tho they have nothing in common with Amy. The work is not suited to amy's ability except for may one job where the guy counted out ten large nails and dropped them into a package. And he was out of work at the time because they had run out of nails. Its called downtime and it looked there was a lot of it at that place.

I laid in bed last nite crying and sick at heart at my daughter's plight. I can't go on right now.

Rain Rain Go Away

We've had four days in a row of rain, lots of rain. My mood has been down and I felt bad this morning when Amy hollered to me while she was getting her shower, "Mom, don't be depressed today." That knocked a little sense into me and I vowed a better day.

Not up to doing this right now. Maybe later today.

Bitch Bitch Bitch...............

i'm going crazy. There is no one to turn to. That's what being this age is about. No one wants to hear your worries or problems. They just want you to make no waves, no complications for them and their lives. And I get that. But this is lonely. Amy has been home from camp for a week now. Mostly during the day she listens to books on tape and for that I feel guily that I'm not interacting with her. Just doing mindless housework from my wheelchair. She's leaving home soon to live somewhere else. It hangs above us like a threat and at the same time it is exciting and a new part of life for her. Daily she tells me she's SO glad she's not going to school anymore. She will be working at a work center in the area she's moving to. I am full of worries that she will sit without work to do during slow times or without meaningful work at all due to her physical and visual involvement.

And i'm worn out. Tired of being in this chair, having to be lifted out at bedtime. Wanting to spend more and more time in bed. Now I've been told I'm anemic and that may explain the weakness and joint pain increase lately.

And while I'm here alone making the best, HE is not working, sitting all day at his kitchen counter playing with facebook, doing who knows what. Drinking. Putting his life and others including his girls' lives in jeapordy because of it. Living as he wants to selfdestructing all the while. While the money my mom left me dwindles away. I am powerless in this situation. I'm watching as my life unravels and he self destructs. Goddam it.

Jiggety Jig

The title to this post has to do with Amy being home from Shady Oaks Camp as of yesterday. It's part of a nursery rhyme that starts out "To market to market........... Its day two on a Sunday morning just before 11am. Amy is listening to a book on tape, a novel I read recently by Elizabeth Berg, Durable Goods. Shortly, I'll get on with my day and shower etc. because I'm going out in public today to grocery shop. The van is fixed again $1500 later.

Still no word regarding medical coverage. I've been in this chair coming up on five months. Don't know if I mentioned in previous entry that Amy has received "funding' from the state enabling her to move to a group home and begin living independent from me. She could me leaving home as soon as two weeks from now. She told me she hoped she wouldn't be moving out right after camp was over and I can understand that. I know she knows this is a break from one life and is a little apprehensive about it. I am too............
But she has always adapted well to changes. This is a big one.

Yesterday evening I had a moment. I was sitting in my wheelchair on my front driveway with Zoe on my lap. Cares were whizzing by on a Saturday evening and I was remembering when I was out and about going here and there particularly on the weekend. I started feeling sorry for myself sitting there--- all alone, no where to go, stuck in the wheelchair. Then I had the moment. Something gave me a good kick in the head bringing on a reality check. Here I was sitting in my own yard, my beautiful yard, on a warm summer evening, in good health, with my little Zoe snuggled on my lap. I spoke outloud to myself then and there saying something like wake up and smell the coffe and stop the pity party. So I did.

I've failed to blog this summer as I'd intended to. The past eight weeks may have been somewhat predictable due to circumstances, but I did read many books, I got closer to Sheila and Pam my sis in laws, I delighted more than ever in my talks with Allison and Annie, and I even lost some weight.
I got a haircut/trim and noticed I don't look bad for a woman nearing 60 except for the weight. I made some real promises to myself that when I am ambulatory again I will be there for those who need me with no excuses of bad knees or inability to get out because its difficult sometimes to do so with Amy. No more excuses I like to call it.

Ok this is getting old and my right hand is now numb another new glitch in the ongoing saga of a deteriorating body. But we're all in the same boat, just in different parts of the voyage. yay me!! yay life!!

A Different Summer

This has been a summer of waiting. Waiting for approval of medical coverage so that I can have double knee replacement surgery. The past several summers with Amy gone at camp I was able to get out and visit friends and family and run errands. This summer I'm not in pain because I'm in this wheelchair and not bearing weight so its easier to do house work and cooking etc but I can't get out on my own unless someone drives me. I've done a lot of reading. I go bed early because I need assistance getting onto the bed so I watch a lot of tv till late at night. I stay in bed in the moring sleeping and reading because I know that I get up too early I'll be in the chair all day till seven pm. or so. I really feel like a senior citizen and I'm only 58!!

My plan is to regain my life after surgery and rehab so I can get back to independence and an active life style. This weekend Allison is moving to a house from an apartment; I wish I could be there "helping" her and experiencing it with her. I can't right now tho. Before the surgery I have to be cleared to have it by going thru many types of exams and tests. I hope i'm healthy enough to have it!

Took a shower today. I drape my wheelchair seat and back with shower curtain liners. It works just fine. My SIL is coming to visit tomorrow. I'm going outside to read for awhile. that's all I got.

Back to Camp Monday

Books Books BOOKS!

I have my own personal librarian. Her name is Betty and I remember her extension by the highway of the same name--355. Betty brings books to me at home as a part of the "homebound program" whose title is self explanatory. A service for shut-ins. There's a term I haven't heard in forever.

Before I was a teen, a piece of mail was delivered to my house asking for employment or help for "shut-ins". There was a picture of a pitiful looking man perhaps laying in bed and because of my youth, lack of knowing about life and what can happen to one during it, I laughed at the picture and the ad. I may have done more than laugh at it, perhaps respond to it and not in a kind way. It comes back to me in bits and pieces. It was a letter from this man asking for something. And all I could do was laugh. Talk about Karma. I remember something else that I think I laughed at which has also come and bit me in the butt. It was a book of matches that said "Made by the Handicapped" and when opened, the matches were mangled and broken. Yes, that was funny to me.

So was the Christmas Card I bought in Old Town over my first Christmas Break home from college. It was a picture of Santa hanging on the cross. Inside it said "Let's put Christ back in Christmas". I actually mailed that card to some friends. At the time I thought the card extremely irreverent and edgy. My mom looked at it and said something like "Oh, Kimmy........." but now i realize it wasn't irreverent. It was to the point and true. It wasn't something disrespectful to Jesus, but against over buying and forgetting the real meaning of Christmas. Why didn't I see that then? Maybe I did and have forgotten. There is a big chance of that actually.

So I have my own library lady and its great. I've just finished several short novels by Elizabeth Berg who grew up in the sixties as I did. I believe Amy will enjoy some of these books also and so I ordered some on tape for her today. God bless Amy. That's all I will say now because saying it brings tears to my eyes. I am proud of how she is maturing and dealing with what life has dealt her. She is at camp for eight weeks now, coming home every other weekend. She told me she hoped I didn't feel bad when she told me she does not miss me. I told her that's exactly how a well adapted person feels and that she is exactly that. If all goes as planned she will be leaving home within a couple of months to live in a group home with other adult women. She is ok with it and knows she must strike out on her own away from home to make her own new home. But I worry about evenings and tv and who will tell her what's on and when and who will watch with her? And i worry about everyting else about her care: what she will wear and how will she look, and who will make sure she looks ok, and who will make the bed comfy and clean, and keep her parts clean? and it goes on and on and I realize that I'm the one who's really in for the change..............yep its hard at this end.

My July 4th Weekend

It's July 5. I'm writing before Erica comes to lift me onto my bed with the hoyer. Had more than one lean cuisine for dinner. i'm stuffed. i even took the liberty of using some rooster sauce which is a gamble for my "system" because that there stuff is hot! its an asian spicy type of salsa in a way. My dear sis in law Pam spent the afternoon with me. We sat on the front driveway and simply chatted. i'm always comfortable with Pam. We've known each other for as long as Al's been alive and some before then. Its the same with my other sis in law, sheila. Our husbands are brothers, still hanging out together, smokin and drinking and bs-ing same as always. And we are all divorced from them, them from us. Whatever.

Pleasant afternoon, subway lunch, good conversation. I had some impatiens I hadn't planted yet because i can't get the wheelchair to the spot where i want them. Pam put them in for me--five of them. Now i'm listening to Jack Johnson.

Yesterday, the 4th was rainy till about four. I was invited to Deb's and thought i'd go but it rained all day and i took my time taking a shower and then sat at the kitchen table reading a book my Elizabeth Berg putting off calling over for a ride to Deb's. I kinda thought rog might call and say when should i pick you up, but he didn't. and it wasn't his job to do that either. It was my job to set up my plans and i didn't. And it was fine. Went back and forth between feeling like i should be somewhere with people but my people are grown up and away. Allison called more than once. She is in Washington with walker and his fam. She and W were walking along the edge of the lake his folks live on - on their way to his grandparent's house across the lake for a 4th celebration. Annie sent me a pic of the canoe she was in on a sandbar in some river in N Dakota. She and her bf were camping with friends. Amy called from camp in the morning while her wheelchair was getting decorated for the holiday. The campers go to a park where there's music, food and fireworks. I envy some of the things the girls get to do but am always happy for them. I wonder if my mom ever felt envious of my youthful activities years ago.

I think she may have envied my youth but she had my dad and her life with him and I believe they were happy for the most part. After Ken and I left, they had each other, their boat, the yacht club and friends..........good for them. While i was living my young married life, I never worried about my mom or dad. They had each other. Now I have grown up daughters concerned about me, me being alone, my health, what i'm doing, and while I love talking to them and hearing from them. i don't want to be something in the back of their mind that makes them feel guilty for the full life they're living. and i'm afraid i am.

i'm particularly vulnerable right now with both knees shot, unable to pick myself up out of my wheelchair, needing assistance every night. I'm not even 60. This knee surgery WILL happen and soon. I WILL receive necessary funding for it. I have to. I'm in this chair needing someone every night until i do. its not like i can will myself up and out of the chair. how did i get here? no time for blame tonight. it doesn't help anyway, does it?
no.

I now have my own wheelchair. My knees have finally gotten the best of me and in order live life I bought a wheelchair. Previously I'd used a walker in the house and a cane outside. Then last fall I realized that if I was going to attend school functions for my daughter or take in a movie with her, I'd have to hoist my extra large seat sized walker into the back of the van. Sometime after the start of the new year I found myself giving up and staying in and down--as in not moving around the house much and feeling down. By the time March rolled around my pain level had increased, my legs were weak, and I was spending much of the day on my bed because of its height from the floor. It was easier to stand from a sitting position. I don't quite know what happened after that but I do know that the last time I was able to pull myself up into the van was early in March.

Caring for Amy, my 21 year old daughter with cerebral pasly, became excruciatingly painful and a near impossibility. While transfering her from her wheelchair to bed or her recliner I had to sit and rest every few minutes. I moaned and groaned and cried and cursed making life for poor Amy what it should not be. I stopped cooking meals because I could no bear to stand long enough to cook and prepare and clean up. Life stopped even tho it went on.

Then I did what I should have done months, maybe years earlier. I got some help. I got a list of people from a local advocacy center for the disabled, ironically the place that amy volunteers/works twice a week. The list had names of people looking for work as a personal assistant for people who need assistance in daily living due to illness or disability. I knew that the service was out there for us to use but did not want to take the time to make the call, interview the people, figure out exactly how and when to use these services, etc.

My excuse for not looking for help from this list was from a couple of years ago when I attempted to find some help. Someone answered my call and told me that the person I was calling was "back on the street again" and did not know how to reach her. Somehow that discouraged me from looking further worried that I was taking a chance I wasn't up for in letting a stranger come into my home to care for Amy.

My Bed

When my ex and I picked out this king sized bed 23 years ago after losing all in our bedroom to a fire, little did i know of the many days i'd lay on it overwhelmed by life's circumstances, physically drained from caring for my daughter disabled with with cp and alone, as a single woman, single parent disabled by rheumatoid arthritis and obesity. This is a mahogany four poster bed with pineapple finials topping each post. It is a huge bed sometimes shared by my oldest daughter where she empties her heart to me, tells me how much i mean to her, and where we giggle and laugh together about silly inane things. It is a bed that my parents cuddled with their grandchildren once upon a time in galena. It is a bed holding memories of three little girls and a mom and dad cuddling and laughing.

Boycotting House

The story last night on "House" was about a teacher for children with special needs. Right before the teacher fell over in the classrrom vomiting blood a female student in a wheelchair was shown to pee in her pants. Nice characterization of special needs kids......on top of that, the wheelchair they had her in was the generic type you find parked in kmarts and walmarts for patrons with ambulatory problems. Having a special needs daughter with cp who has been in a wc for 16+ years, kids in wheelchairs that are clearly not their own and ones the must soil their underwear while in them are a pet peeve of mine. Later on House refers to brain damage the teacher may incur if not soon diagnosed and says she will need her own special ed class.

Saturday at the fe fe meeting

Amy is the fe fe and she is at her support group meeting on this saturday morning as I sit in the lobby of Access Living of Chicago and wait for her. This is the first time I've brought my laptop out of the house. I figured out how to find an available network and connect to it and i'm pretty proud of myself. i just ordered lunch from the restaurant across the street, el norte, so i'm looking forward to some mexican food here in a bit. In the background i hear the sounds of the girls' voices in the meeting every now and then picking out amy's voice. i don't know what goes on in the meeting. i spose i could sit in there and amy'd never even know i'm there given her lack of visual acuity. lunch is served during the meeing and today it was chicken wings, fried and something else. hope amy fares well.

i'm sitting in the lobby and i don't think the heat is very high. my feet are numb and i'm about to put on my coat......maybe the spicey food will warm me up. waiting..................

Still Friday Morning

once again changed my blog name and description. just in case i drop dead i want to be clear that there is a bright spot in my life and that is my daughters. all three of them. Just as i know they want me to be around in years to come, let there be no mistake about this. i want to be here too. and it is because of this i feel like a deer in headlights as i try to sort out all the right steps i need to take to insure that i will be here. i feel like i am at a crossroads. its now or never that i have to get things right. find a place for amy to grow and blossom, regain my health before its too late which i pray it is not, and be around to be the mom my girls need in their futures. but where do i start? think i'll do the dishes that have been in the sink for 5 days for starters.

Malaise or Mayonaise

watched a show about hormone replacement therapy today on oprah. i now have a new thing to worry and wonder about. could the general malaise, lack of energy/hope, tiredness and ability to sleep at any time during the day, disinterest in life and the people in it be the result of a hormone imbalance? Or is is the rheumatoid arthritis and pain that makes me not want to move, cook, go out, do basic housework, interact with others? or am i just depressed? or am i still getting over my divorce? or is it caring for my 21 year old disabled daughter by myself and dealing with her boredom, anxiety, and disconnectedness from life? or is she that way because of me? or am i worried about not being supported by my ex and the diminishing of my small bit of money left by my mom? or is it the 100 plus pounds i need to lose? is that why my body hurts so much? and why can i not eat in such a way that causes me to lose weight? and why can i not stand up straight without becoming winded and so weak i must lean on something? or is my general weakness felt for at least the last four to five years because of my arthritis and my not using my body and thus causing weakness? is it the physical care of my daughter and the worry about her future and future happiness wearing me down? is it because i feel as if no one else in the world really cares about her because i have cared for her alone all of her life. i mean really cared for her......... gee i don't know. maybe i'm stressed out because i need to work but don't have the physical strength to walk about my own house without a walker???? maybe i'm stressed because i have had NO medical insurance/care for almost a year. maybe i'm afraid of dying soon as things continue to spiral downward daily? maybe i'm worried about the economy, my non supportive ex, losing my house, and basically being homeless in the near future. but what most worries me most of all is my inability to move forward positively about any of these thing, to take steps in the right direction for more that three hours into the future, to care about any of this enough to be able to even express what is happening to me?

This Blog is Two Hours Off/Early

its six pm. went into the kitchen, opened some fish fillets not knowing what i was going to do with them, read the package and got the idea for egg and breadcrumb breading, and then started looking for breadcrumbs. In the process, I yanked packages and cans and boxes of pasta out, leaving them on the floor still.

its at least a half hour ormore later now after two phone calls--one from al walking home from work and one from my only friend, amy. its after 6:30 and no dinner is made and its not going to be. i need a plan where food is ready early in the day. i cannot cook, prepare, clean up after i have greeted amy from school and done the whole bp and chair change. it drains me.

gotta go order takeout and watch tv like i do almost every nite. what a life.

i hate my blog description. and i hate the gray little spider that has made its way onto my laptop on my bed here. that may explain some of my little bites here and there. thought i was coming out of the depths but never left i think. school bus sounds. bye bye

No love here

today is worse than yesterday but not as bad as tomorrow. sounds like a song from the 70's. my physically handicapped daughter is crying and wailing for a "helper" to arrive and get her out of bed and shower her. the usual one is unreliable and now we are waiting for the fill in who has yet not arrived. worst of all i know i should have gotten her up myself. i didn't because i pay people to do it because i have rheumatoid arthritis and am generally unable to do it quick and efficiently but today i should have just gotten amy up myself.

i am not paying for today as if it makes matters any better---or for the day recently this same thing happened and the worker showed up sick and coughing all over the place. amy needs to be cared for by someone other than me, her mother. and that is a source of angst for both of us as is the change in her life, my life, as we work towards finding her a different place to live and grow and become herself away from me, her depressed, obese, in pain and broken down mother.

amy is 21 and several years back is when i realized that the easy carefree times are long gone in terms of being her mom and life in general for me. i used to refer to a general ache i always had in my heart for her because of her disability cerebral palsy and the different life she has been assigned.

it is 9:20 am and the helper is still not here with the original arrival time having been at 7:30 and every minute i hear her crying i know i should have, should right now go and get her up but not doing it because the helper is bound to show up any minute. right. the employee from the agency did not call me to tell me that she'd secured another person to come to my house. i finally called to find out when the regular helper would be here only to learn that she was not coming after all and someone from a town 10 miles away would be here. that was an hour ago. it is so unfair for amy to lay in bed and wait and for me to assume this person is moments away from arriving.

its an hour and a half later, amy is up without shower because she was so worked up she opted for a bed bath, breakfast is over and i'm about to start on the kitchen which has not been cleared of dirty dishes for over a week. allison is due back early this evening from hawaii a nice little perk of having a bf whose parents take great vacations and bring her with.

i never recovered from xmas and slid into a slump after amy went back to school on the 7th of jan. we had about 15 days at home together with cold temps, snow and ice basically isolated from anyone and everyone unless i ventured out with my walker to take in a movie with amy driving a big cold van with a dangerously loose running board i have to balance on hanging on to the steering wheel as i pull myself up into the van. once i'm in and have caught my breath all is well till its time to get out again. in and out of that van is rigorous activity further aggravated by a left shoulder that does not work and is in need of replacement according to docs who say it is "bone on bone" which explains the excruciating punishment it doles out when i attempt to put it to work. to complete this picture i am at least 100 pounds overweight and my knees, ankles and back can no longer support the load so i am sedentary, weak and breathless with the slightest output. and i don't see things improving in the slump/hole i have come to call normalcy.

Inactive Despair

inactive despair the opposite of active love the blog name. why am i wasting my time writing negative despairing thoughts? because i can not write anything else these days. i am in the lowest of lows ever. never have i done so little, been so inactive, let amy stew in one of her books on tape and cared so little.

i tell no one how i feel. to what end? i don't want attention or advice and no one can help me. i'm on a downward slide which is gaining momentum. i am steeped in guilt over my lack of involvement in bettering amy's life. all i want to do is sleep when she is at school.

pain is one issue. weight is another. anger, resentment, and self pity. fear of amy's future. and mine.

i try to refresh myself with meditation and good actions but lasts a short time. this might be something to big to battle and win over this time.

and i am lonely. i think i am. i choose to keep to myself. phone conversations are bland and short with me. i will not lay my world open. it is too bleak and my energy is too low to even try to tell what is happening to me. i am writing this because i still have a shred of hope for change. maybe i will look back at this and be thankful to be out of it, past it. i hope so.

wasting my life

that's what i've done for the past four years and i can't stop.