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We all change and grow as we move through this life gaining experiences and knowledge. That's not a bad thing but I'm not certain I like the way my life has changed now that caregiving has become my life. I've acquired new knowledge but it's not necessarily the kind of knowledge I would choose to learn.
In my former career I was a special education teacher. I loved working with the children and I loved showing them what they could do despite their limitations. We formed a team and together we did the impossible every day.
I've had parents tell me that I gave them their first family Christmas because their child never understood or anticipated the holidays before and this year they were excited and filled with the joy of the season for the first time. Sometimes parents would sit across from me in a conference, their eyes brimming with tears, because their child was able to read to them from a book and they never thought that could happen. I've seen a child's face light up with glee while the wet streaks of their earlier frustrated tears still glistened on their cheeks because they finally managed to tie their shoe for the first time!
The school psychologist would meet me in the hall and tell me to sharpen up my magic wand because he'd just met a candidate for my program. "I always feel so good when I can recommend your class for a placement." Momentarily I would feel a jolt of pride and then I'd start contemplating how I'd fit another student into my already tight schedule and wonder if he was sincere or just trying to soften the blow of having added to my already bulging workload. Still I loved the challenge of meeting a new student and observing them until they told me either in words or actions what would motivate them, what they needed to learn and what special talents lay hidden in that frail body or complex brain.
My first supervisor told me I was wasting my talents working with special education students but she didn't understand that regular education students can sometimes learn in spite of a poor teacher while a student with special needs had to have a teacher with special skills. Every time a child learned something, accomplished something or succeeded with great effort, I'd secretly say to myself, "I did that".
I don't bring the same confidence to my caregiving and I don't get the sense of satisfaction from it that I got from teaching. I heard the doctor when he told me that Mom wouldn't be here today if I hadn't devoted my life to her for the last five years but I question if that is an accomplishment at this point. Has she suffered longer than she needed too?
She didn't want the pacemaker put in two years ago but the doctor in the emergency room said if I took her home without it she'd die in a few days. With it people regain their lives and live on for years or so the doctor said. Mom never got her level of functioning back. She agreed to the surgery because it was what I wanted her to do and she had to spend three months in rehab trying to regain some mobility only to eventually fall and break her pelvis nine months later. Again we went through a painful rehab and she was able to come home for a few more months before she fell and broke her hip.
I've learned to give suppositories and treat hemorrhoids. I've learned you can get an athlete's foot type fungus between your folds of fat and that has to be treated with meds. I've seen parts of my mother that I never wanted to see. I've learned the different routines for dealing with diarrhea and constipation. I can fix the hospital bed when the spring causes the mechanism to jump the track yet again. I've learned that watching someone you love suffer can be worse than suffering yourself.
This is a battle I can't win. She's going to die no matter what I do. I can only try to bring her comfort and companionship. It's enough. It has to be enough.
This piece was inspired by B. Lynn Goodwin's writers workshop for caregivers. Thanks, Lynn
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Okay, can you see the steam coming out of my ears? My in-state brother is here visiting. He went last week and finalized funeral arrangements for Mom. It was made easier by the fact that Mom had made many of her wishes known when she planned Daddy's funeral in 2003 and the funeral director had made notes. So we are basically duplicating many things. The price has gone up almost 30% in the five years but that's to be expected.
Anyway, my brother and I go out for breakfast when he's here and my hubby is here with Mom. It gives us a chance to talk without either of them around. Last night I told Mom we were going early for breakfast this morning as I wanted to be back when her Hospice aide came to help move her and help my hubby to corral the dogs and such. She said not to get her up that early so when I went down to give her the anti-nausea meds at 7:30 a.m. she said she'd been awake since 6:00 a.m. and she was nauseous. Moving her can increase the nausea because of her vertigo which is why we try to give her the meds at least 40 min. before the aide comes to bath her. I checked on her at 8:30 when we got back and she said she was still nauseous. I asked if I could do anything for her and she said no.
Now the aide arrives at 9:15 and Mom is furious. She tells her she's been waiting for her family to come and take her home and asks how she found her here? The aide simply tells her she is home with her family and in fact here's your daughter now as I walk into her basement apartment. Mom says if she could walk she'd leave my home. I ask her what's wrong and she says, "Oh nothing, I've enjoyed waiting here in bed for three hours." To which I reply, "I'm sorry Mom I've been down here three times and not once did you say anything about wanting to get up."
The aide tries to defuse the situation by saying, "Well that's what I'm here to do so let's get you up." She asks, "How's your stomach?" and Mom's reply is "Empty". To which the aide says, "Did you want something to eat?" and Mom replies, "No." So the aide says are you still nauseous and Mom again replies in the negative and let's the aide take her spit up pan from her hand.
After the aide washes her, we get her into her chair and I ask her if she wants something to eat and she replies, "If you're not too busy."
As I walk the aide out I try to tell her I'm sorry for the way Mom has been acting out this morning and she tells me not to worry about it. It's evident that she was upset that I left her to have breakfast with my brother but that I shouldn't feel guilty or let Mom guilt me because I had done nothing wrong.
Mom is still angry and commented that the aide would take my side because everyone always does so she evidently must have said something to Mom about my going out for breakfast being a good thing while she was washing her and I was out of the room.
She'll settle down and I know she's angry with the situation that makes her so dependent on me more than she is angry with me. I also know she'd like me in her presence 24/7 to do her bidding but I honestly would go crazy if I couldn't get away for a bit now and then.
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I wonder how long a person can live on nothing but canned peaches and pork rinds? Mom's appetite, like everything else is slowly deteriorating. She'll sometimes eat a half cup of jello or an occasional half cup of mashed potatoes and gravy but mostly she's living on the peaches and pork rinds. She eats a couple of 4 oz. servings of canned peaches and half of an 1 oz. bag of pork rinds daily and it's been that way for a couple of weeks now. Before that it was watermelon, jello and a small corn muffin dissolved in milk. The time it takes to feed her is also increasing. I feel so badly for her as she struggles to swallow a sip of water or a mouthful of peaches without choking or gagging. I get a kink in my back from reaching over feeding her because it can take 30 minutes for one serving.
She's slowly losing weight as well as muscle tone and stamina. I've had to order smaller adult diapers since I've been wrapping them further and further around her till the ends almost meet in the middle of her belly instead of on her sides now. Her Hospice aide had to apologize for calling them diapers as they've been instructed to refer to them as briefs. I'm sure there are some clients who object to the term diaper but in Mom's case it doesn't seem to bother her. I'm pleased that the Hospice workers are sensitive to these dignity issues but I've always thought that the process of labeling and politically correct terms can cloud the real issues of bias and prejudice that are so rampant in our society.
I guess I'm sensitive to this issue because of my career in special education. They keep changing the politically correct terms but that does little to improve the discrimination that happens so frequently for the disabled and elderly population.
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My youngest brother was just here for a few days. It was so good to see him. It's been almost three years since his last visit. It was a bit awkward but I think it went well. Mom felt badly that she slept a lot but no one else thought anything of that. After he left I asked her if she had a chance to talk to him and she said she didn't say two words to him while he was here.
Her comment to him when he left was that she wouldn't be able to say good-bye to him when he visited again. He didn't seem to know what to say to that so I said, "You don't know that." So she said, "Well I won't be able to say anything when he comes to my funeral." To which I replied, "Well maybe he'll visit again before that." So she said, "Well that would be nice." Like I said, awkward.
I think his visiting her and her wanting him to come so much probably says more about their feelings for each other than the words that they couldn't say to each other once they were together. She asked me everyday for a week when he was coming. Why is it that it is so hard to speak about our feelings? It's not like we have a dysfunctional family. I know there are families where things have happened and the members haven't spoken for years or are unable to forgive or forget past wrongs or perceived wrongs. Our family is not like that. We just aren't demonstrative with words or embraces.
After he left, Mom commented that he is so like my older brother in that he didn't embrace or kiss her good-bye. Still he calls her every Sunday without fail and has done so for years. My older brother comes to visit every other week driving two hours each way and stays for a couple of days. Both these boys are very devoted to their mother and I know they are grieving her loss as much as I am at this difficult time but it is hard for them to express it.
I realize it's silly for me to have expectations about these visits. When my younger brother visits next week it will probably be much the same. Obviously, it's good that someone in the family is not the puddle of emotion that I am. Sometimes I wish I had inherited the control that the boys seem to have.
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Yesterday was a difficult one for both of us. Mom's Hospice nurse visited her early in the morning. It disrupted my routine with her and as a result, I forgot to move Mom's call bell from her bedside to the living room. We were with her till about 10:30 and she was pretty tired by then so I left her in her chair and I thought she'd probably sleep. When she's awake she usually rings for me every 15 minutes or so if I'm not in her basement apartment with her. I use the time she sleeps to get things done around the house.
When I went back to check on her about 12:00 she was very upset and rightly so. Without the call bell she had no way of calling me and she had a dirty diaper. She could have called on the phone which is our backup system. She's used it in the past but on this occasion she was too upset to remember that. I felt horrible and apologized for my mistake but she was too upset to think about anything but the fact that she was feeling rotten. She cried and gagged and wouldn't eat or drink anything for lunch after I got her cleaned up. She refused to let me do anything for her insisting she didn't want to burden me any further. She kept saying she just wanted to die so she wouldn't have to bother me any more.
The Hospice social worker was coming at 4:00 and I had thought we wouldn't really have much to discuss with her when I had set up the visit but now I was glad to have someone else to help me deal with all this upheaval. Throughout the afternoon Mom continued to be upset. I didn't know what else to do. I showed her again how to use the phone and put a red sticker on the one button dial that would dial our number. I let her listen to the operator tell her to hang up and let it ring because she was dialing a number on her own line. She said she wished she was rich so she wouldn't have to rely on me like this. I reminded her that in the rehab there were also several times when an aide would forget to give her the call bell but I was finally so upset that I suggested we talk to the social worker about what the options might be for her if she didn't want to stay with me. This she interpreted as my wanting her to leave and it started more crying and protestations that I wanted to get rid of her and never wanted her with me and was just looking for any reason to toss her out.
At that point I was really worried about what the social worker would think when she walked in on all this. I met the social worker at the door and explained to her what had happened and told her Mom was upset and had been crying off and on for several hours. I told her I'd apologized and accepted full responsibility but that it didn't seem to appease Mom. There were no tears for the social worker. In fact, she was so totally understanding. She explained that I was a wonderful daughter who took such good care of her and what had happened was simply an accident. I was dumbfounded.
After the social worker left, I came up and told my husband who had listened to me rant and rave all afternoon about how unreasonable Mom was being that she was fine now and as she told the social worker, "It's just water under the dam now." His comment was, "That surprises you? Everyone knows how she plays you like a fiddle and always has. I guess she thought you had suffered enough or maybe she got scared that they really would move her to the Hospice home."
Today she's been very demanding. She doesn't want me to leave her alone at all. She seems confused about where she's at. It's 5:00 p.m.and she's finally asleep. She's been up since 6:30 a.m. this morning when she thought she was going to have another accident but hasn't had a bowel movement all day. I don't know if this disorientation is because of the upset over yesterday or if there is something else going on. While the Hospice aide was here she seemed fine, joking with her about the dogs wanting to eat her up.
I've ordered another call bell system that has two remotes as well as two chimes that I can put on either end of the house because there have also been times when I didn't hear the chime if I was in a room with the door closed and the air conditioner and TV were on. I hope that solves the problem.
The social worker also suggested that she take one of her anti-anxiety pills the next time she was so upset but she was not willing to do that. I'm thinking next time I should take one of the anti-anxiety pills!
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On Saturday my oldest brother was here for a few days and his children came to visit Grandma. My nephew has two little boys, a two year old and a four month old. The two year old is just a bundle of personality. He entertained everyone for hours with his singing, dancing and games. He loves hide and seek and I so enjoyed playing with him. The four month old is growing so fast it is unbelievable. He too is starting to command attention. He smiles and babbles and tries to stand when you're holding him on your lap.
Mom did so well with their visit. She slept a little but when she was awake she was fairly alert and I watched her smile as her eyes followed the boys and their activity. It was wonderful to see the whole cycle of life being played out in Mom's basement apartment...the young and the old interacting. The two year old was sitting in the tiny rocker that was once Mom's toddler chair and I was struck by the tales that little chair could tell if it could talk. I remember Mom telling me that as a toddler I had been rocking in that chair on the grate over the furnace when I toppled out and burned my hands on the hot metal grate. It wasn't a serious burn and I would guess I wasn't allowed to rock on the grate after that incident.
I was struck yet again about how the beginning and ending of life are so similar. Mom pretty much eats the same foods as her great grandsons. They shared her vanilla wafers and applesauce. They are both reliant on others to care for them. They share the same need for frequent naps. It seems an odd life cycle.
Over the next two weeks my out of state brothers are planning to visit. I was a little thrown back when Mom suddenly said how odd it was that the boys were both coming for a visit at this time. Her question was, "Are they coming to see Mother before she croaks?" I wanted to say, yes exactly but thought I couldn't be that blunt so I said something about John had been planning on visiting this summer all year and Terry who frequently comes at Christmas was planning to be in Greece to attend a conference for his college so he was using the time between his summer session and the fall semester to come for a visit. Her question made me wonder if she truly realizes what's happening to her.
She also said something odd when she woke up yesterday afternoon. She asked if she'd been physically sitting in her chair prior to waking up? I asked her where she thought she'd been and she said she didn't know but she didn't think she was "here". Again, I didn't know quite what to say so I said she was probably in dreamland or wherever one goes when they sleep and she agreed that's probably where she was. She is often confused when she wakes up these days. Her disorientation lasts longer than the brain fog I sometimes experience upon waking.
I hope she stays strong and alert for another three weeks so she can fully appreciate my brother's visits. That's all I'm praying for these days, that and the strength and wisdom to get through what lies ahead for both of us. Her Hospice nurse confirmed my fears when I said she seemed to be making a slow decent physically and mentally. She said it was difficult to watch a loved one slowly grow weaker and waste away but that was probably what would happen with Mom.
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Mom's Hospice services started on Thursday. I was told they would call before coming but I didn't realize that a thunderstorm had played with our phones and they weren't working. Mom was too sick to get up so I left her in bed and decided to clean out her refrigerator. It was filled with bowls of half eaten food that I had made and she didn't want to eat but wouldn't let me throw out. She is a child of the Depression and never wants to throw out any food. Just as I had finished loading up the table with spoiling food, her Hospice aide pulled into the driveway sending the dogs into a fit of barking.
Cyrus, our Pit Bull can be intimidating and we have to close him off upstairs before letting in any visitors. He has never "bitten" anyone but he has torn clothing and pinched some relatives and friends ever so gently, barely leaving a bruise. He gets so excited when anyone comes. Okay, he goes berserk!
I was totally unprepared for this visit. My hubby wasn't home to go on dog control. Did I mention we have six dogs? The Pit Bull ran through the dog door out to the backyard and stood snarling at the back gate. I tried to head off the aide by going out the front door in total panic picturing in my mind that our first meeting would be when I pried her shirt from Cyrus's jaws. We had told everyone to use the backdoor which leads to Mom's basement apartment. Luckily she was not coming out of the car. Her rather large, round eyes were engaging Cyrus' in a stare down. I guess the Hospice intake people took our warnings to heart when they noted in their instructions to their people to wait in the car for someone to meet them. I was probably rather curt when I informed the poor woman that I had no warning of her visit or I would have had the dogs corralled.
She apologized profusely saying the agency was to have called so she didn't bother to do so. She didn't know what had happened. As I let her in all I could think of was I hadn't even gotten Mom up and changed her diaper yet! What would this girl think of me?
She asked for the folder that was left here with Mom's care plan in it. I had to dig it out from under a pile of smelly bowls of food on the table and clear a place for her to sit and read it. Totally mortified, I quickly piled some of the bowls up to make a space at the table for her to sit and read. She asked if Mom had been given her Compazine to combat nausea so she could move her around. I rather smuggly explained that I was told to give it 40 minutes before the visits and in the absence of an advanced notice, I hadn't given it yet. I asked if she wanted me to give it now and she said, that would be fine.
While I was doing that she asked to use the bathroom sink to wash her hands and as I showed her into the bathroom I saw that one of the dogs must have already used it. There was a rather large puddle on the floor. I quickly apologized and cleaned it up trying to explain why I was happy the stupid dog had used the bathroom vinyl rather than the bedroom carpet. "Is there no end to my humiliation?"
She used her cell phone to call the agency and report that no one had informed the family of her visit and they told her there were no less than five attempts to call the house the day before and the line was always busy or else no one answered. I immediately picked up Mom's phone and sure enough heard nothing but deadly silence where the dial tone should have been. "God, just take me home now before I commit suicide by hanging myself with this useless phone cord."
To her credit the aide was very sweet. We managed to get Mom up and washed and another aide came on Friday for a prescheduled visit that came off without incident. This weekend the agency called and said the second girl would be returning for the three visits this week. I'm sure it's just a coincidence don't you think?
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I remember my first roller coaster ride. I must have been nine or ten when my Dad finally agreed to take me after years of begging. I was filled with pride at having attained the required height, age and emotional maturity to embark on this passage from childhood to young womanhood. He trusted that I would be able to incur the danger and not suffer night frights or panic attacks.
I was frightened as we slowly climbed that first huge hill. Somehow it seemed much higher when I was looking down than when I looked up at it from the safety of the ground below. I noticed the smell of the grease on the track and how my knuckles were white because I was clutching the bar for all I was worth. Just as I was wishing I had waited another year or so to make this forage into fear the car ascended the hill and we were plunged towards the ground at a breakneck speed that sent my stomach pushing upwards into my chest. My Dad had a protective arm around my shoulders or I surely would have flown out of this contraption. The wind rushed by me. The wooden track clattered and the car swayed from side to side as we rounded the curves tossing me first against Daddy and then against the side of the car. There was no time to panic now or think of anything. I could only feel the sensation of being totally out of control, at the mercy of this machine and then I heard the air brakes and felt the jolt of the car as it screeched at an ever slowing speed and finally stopped with a jerk.
My knees almost collapsed under me as I felt the security of the wooden ramp that brought me safely back to the grass. I don't think I rode the coaster again that day. It probably took me a year or more until I could muster the courage to get back on it knowing what now lay ahead but eventually I grew to love that ride.
Now I ride the emotional roller coaster that life has placed me on. I've rounded that first huge summit of placing Mom on hospice. Just as the actual coaster carried me up and down, tossing me to and fro and placed me at the mercy of the unforgiving track, so now do I ride the emotions of fear, sorrow, grief and panic unable to control them at will. I am only able to react to them as best I can.
The hard part is not seeing the curves, tunnels and hills as they loom in front of me. I am riding along making supper or running the vacuum and all of a sudden I am hit with a wave of panic "I can't live in a world without Mom!! My heart races and terror causes my stomach to lurch into my chest. I can't stop falling, racing towards danger as the adrenalin pulses through my veins making my heart beat so loudly it fills my ears with it's ever increasing rapid pace, pounding as the panic grips me. Then it passes leaving me weak kneed and trembling. Some deep breathes and I'm okay again.
I'm shopping, looking for the peaches that are ripe enough but not softened to the point of early rot and grief overcomes me. "She's dying and I am going to lose her". Where did that come from? Tears run uncontrollably down my cheeks as I run to the nearby ladies room to cry in silence until I can regain control and be presentable for public view. My mind is filled with scenes from the past of her as my scout leader taking me and a friend to visit the sick in the hospital to take them homemade Valentines or of her icing a red velvet chocolate cake for one of my brother's birthdays allowing me to lick the beaters so I have the first taste. "How will I live in a world where there will be no one who will unquestionably take my side of any dispute and always have my back no matter the merits of the argument?" I remember the seventh grade teacher who made everyone in the class write for homework 1000 times "I will act like a lady/gentleman" because the class was noisy when he left the room. Mom wrote the phrase in her own distinctive handwriting for the last 500 times leaving a notation on the bottom of the assignment that said, "If my daughter fails to act like a lady, I feel I must share half the blame for improper child rearing!" These memories that flood my consciousness fill me with pride and make me smile through my tears. My self control returns and I am able to return to my grocery shopping.
What will I be left with at the end of this ride? While a part of me screams, "Stop I want to get off now!" I realize this is not an option. My Heavenly Father has his arms around me holding me securely as I ride. I realize that He has heard Mom's nightly prayers asking Him to bring her home and He didn't need to use the baby monitor by her bed to do it. I know He also heard my prayer that followed hers saying, "Please don't take her from me. It's hard but I can continue to care for her and I can't bear to part with her yet." He must feel I am finally mature enough to take this ride.
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The team came today to sign Mom up for hospice care. They were here for a couple of hours. I couldn't help but tear up several times while they were here and I was having to tell them what I wanted for Mom and what help I was looking for from them but at least I never broke down totally and sobbed or anything. That would have been so hard on Mom. Mom was able to understand and talk to them as well. She was able to express that she wished to be here at home with me caring for her and that she wanted only to be kept comfortable now.
She said she mostly wanted them to help me to deal with her situation and I told them I only wanted to do what was best for her.
Guess that pretty much defines a mother/daughter relationship...each of us wanted help for the other person. My brother came and was able talk to them as well. I was glad for that because while he still hopes, as do I that she will get better, he heard them echo what I've been saying about forcing her to eat and drink only making her more uncomfortable.
They tried to relieve my obvious pain by telling me sometimes people improve to the point of not needing hospice and even as they said it I was reminded of the times I sat in conference with parents of preschoolers struggling to place their beloved child in my special education class and I would tell them it didn't mean that the child would always need special education or that we were limiting the child's potential. In truth, I knew that children do not overcome down's syndrome and in fact would probably always need a specialized education program but it is so difficult for a parent to accept that their child might not be able to go to college and become president some day when that child is only five. It wasn't a lie. I did have children that moved into the regular education classes but that happened so infrequently. In 35 years of teaching I can only think of two children who successfully made that transition. The truth is it's easier to accept difficult truths in small bits. Deal with today because that's the situation at hand. Deal with tomorrow when it happens.
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Since Mom's doctor recommended I contact hospice services for Mom it's been a whirlwind around here. One of my out of state brothers wants to know if he should cancel vacation plans to come visit sooner than the visit that was planned for three weeks from now. I don't know what to say. I'm still reeling myself. I certainly have no idea about the urgency of a family visit vs. already made arrangements.
My older brother has been here visiting since the doctor's visit on Friday and he said this morning that I was agreeing to let Mom commit suicide by not fighting her about eating and drinking. I can deal with a lot of pressure but I am so sensitive about doing what is right for Mom and balancing her expressed wishes given her mental and medical state with what is best for her in the long run. I am very vulnerable and that hurt so much even though I know he doesn't understand the situation fully.
I took Mom out of rehab five years ago and brought her to live with me against the best advise of everyone caring for her there. They said she was going to require too much care and would only grow weaker but she was so miserable there and wanted nothing but to come home. In the end, it was the right thing to do. She grew stronger, regained her mobility and her life. She had four and a half more years to enjoy her family and although she was in and out of rehab three more times she always got her life back. It required me to push her a lot and there were many times when she wanted to just give up but as she got better it was worth it.
This time it's different. I don't have another miracle in my bag of hat tricks. This time when she came home she grew weaker and my efforts to coax, bribe and beg her to eat, drink, take her meds, get out of bed and participate in life have been met with less and less success. She can never regain any mobility on her own. It's too dangerous to let her try and she has lost her muscle density. Her advanced Parkinson's makes talking, eating, drinking, sitting and holding her head erect more and more difficult. Mentally she's becoming more and more confused. Everything she has to do just to stay alive becomes more difficult for her to accomplish even with my help for feeding, taking meds and even wiping her nose. It's not that I want my life back or that I don't want to continue to care for her. It's just that at this point it seems like I am no longer helping her, I'm hurting her by demanding she do that which she can no longer do.
I hope when hospice gets involved this week they can help me deal with all this. I can't be helping my brothers to deal with their feelings and decisions. I can barely continue to function and do the every day things I have to do. I drove over a curb yesterday, tried to walk through a plate glass window instead of the sliding glass door today and lost of pan of dirty dishes in route from Mom's basement apartment to the kitchen. I searched for ten minutes retracing my steps ten times to find it where I had put it down to let one of the dogs in by the back door on the freezer.
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I took Mom to the doctor today and I was not surprised
when I asked if hospice would be a choice for us at this
stage and he immediately said, yes. This is so hard for me.
I know Mom has been growing weaker and it's harder and
harder for her to do anything; eat, take meds, get out of
bed, stay awake, have any interest in what's going on
around her. Still, I don't know if I'm ready to have her
leave me. The doctor said she was alive because of my
care and that I wouldn't be stopping caring for her but I
would just be focusing on her comfort and managing her
illnesses which are not going to get any better. Call it what
you want, it's admitting that her departure is somewhat
imminent and will be rather I accept it or not. I'll call on
Monday to set up the initial contact. The doctor was
calling them today so they'll be waiting for my call. I
expected this but still hearing it was so difficult. I've been
working so hard to keep her with me for the last five
years.
I can't stop crying.
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I feel like I could write a book about this one topic. Life is all about the choices we make and I don't regret any choice I've made regarding caregiving for either of my parents but....
Financially I took an early retirement to care for my father who was suffering from Alzheimer's in 2003. It means for the rest of my life I will get 3% less in my pension and that was just the beginning. Daddy passed away in 2003 but Mom started to need more and more care. At first I could supplement my pension by substitute teaching and tutoring but by 2006 Mom needed constant care and paying someone to be with her was costing more than I was making so I had to quit working at all. My yearly income was reduced by $8000.00 when I had to quit working. That is sadly missed as the cost of living goes up yearly and my income does not. At the same time, Mom required more and more help financially. The cost of doing constant laundry and having the heat and air conditioning on for her to be comfortable in her basement apartment made the electric bill jump by $60.00 to $75.00 a month. I realized this when she spent a couple of months in rehab. Her small pension and social security barely pays her insurance, meds, incontinent supplies and the cost to have coverage when I go shopping, banking or the doctor's office myself for six to ten hours a week. The cost of finishing off the basement to make their apartment ate up my savings and my retirement incentive payment. Of course that money will be returned to me at some point if I ever sell my house.
Emotionally I never realized how much teaching gave purpose to my life. I was a special education teacher and those children were my only children. I had them with me for five or six years at a time and their successes were my successes. Sometimes I hated to pass them on but there were always new ones coming in who needed me. I always used to say that if I hit the lottery, I'd continue to teach because I never did it for the pay check. It truly was a calling for me. Giving up my class and doing subbing was not the same but I knew I was still serving a purpose. It is very difficult to get subs for special education classes and even though I couldn't have the same impact on the children that I did when I was teaching, I could allow a fellow teacher for feel free to take time off and know someone who was qualified would be covering for them. It was enough for me. When I had to quit teaching all together, it was devastating to me. Mom was thrilled to have me home with her all the time but I had such a hole in my life. After thirty-seven years, I was left with lots of work to do but nothing that gave me joy or satisfaction.
Physically it has become more and more difficult to care for Mom. As she became less able to do things for herself, I had to pick up the slack. Being on call 24/7 means dropping whatever I'm doing when she rings because for a time she'd try and get up and go to the potty herself if I didn't come quickly enough and often fall in the attempt. Now she can no longer do that but a failure to answer the bell means she's in tears and confused and frightened because she thought she'd been deserted or left alone if I can't immediately answer her summons. We used an intercom for a while but she can no longer figure out how to use that so we're back to the doorbell. My knees and back often let me know that I've run up and down the stairs one too many times in the course of a day but it's probably good for me in the end.
Socially, I think all my friends are used to my turndowns at this point. I think it says something that they still invite me to luncheons, retirement dinners and call infrequently when I haven't been able to go anywhere or do anything in over two years. My family still sends me invitations to weddings, showers and celebrations and they are very understanding when I can't attend. My one brother visits bi-weekly when he's in the state but my other brothers are all out of state and other than phone calls we are lucky to see them or their families every other year or so.
Documenting the loss seems a somewhat unbalanced way of looking at things unless you also stop for just a moment and think about the gains as well. This life experience has also taught me to appreciate the wonderful career I've had. It has brought me knowledge about the end of life that hopefully will help me make better decisions about my life's journey. I purchased long term care insurance for myself this year and I might not have done so without my recent experiences with Mom and Dad. It has given me some wonderful memories with both Mom and Dad that my siblings will never have. I no longer buy things that I don't need. Jewelry and the latest fashions are kind of a waste when you don't go out anywhere so I've learned to appreciate a good book and watching my birds at the feeder instead of going to the movies or eating in a fancy restaurant. Pleasure is still pleasure if it doesn't cost anything! Growing plants from seeds can be fullfilling when you have the time and the garden is just as pretty and maybe more appreciated this year because so many of the plants are my babies.
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 We took Mom to visit her newest great-grandson in April. As I was looking through my pictures I saw this one and thought, that was probably the last time I'll be able to get Mom out of the house. She grows weaker and doesn't want to even go outside to look at the flowers any more.
On the 4th of July I bought some fountain-type fireworks and my husband set them off for us. She seemed to really enjoy it. Afterwards as I was basking in the joy of having been able to provide her with some measure of pleasure when my husband said, "I think she enjoyed it because she thought it was the last time she'd ever see them."
I think this all the time now. Each day as Mom grows less able to do anything the question creeps into my head. In May, "Is this the last birthday she'll celebrate?" In August, "When John, my brother, comes to Pennsylvania, will this be their last time together?"
It's almost like I am saying good-bye to her and mourning her loss constantly. I don't want to do this. I don't dwell on it but I can't seem to keep the thoughts from popping up in my head. It doesn't give me comfort and it robs me of the joy of cherishing the present to dread the future so.
I can't keep the thoughts from coming into my head so I always try to just pass it off with, "Well if it is the last time, I'll have this memory to always revisit and enjoy because for right now, she's here and I am so lucky to have her with me for this special time."
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If I've learned anything traveling through this life it's that everything is a trade off. You take the good with the bad and so it is with government programs. Here in Pennsylvania one of the benefits for seniors is a transportation system supported by the lottery profits. We never used it before because I could take Mom in the car whenever she needed to visit the doctor but now that she requires a lift to safely transfer from her wheelchair I cannot get her into my car so we bit the bullet and signed up for the lift buses to get her to her doctor visits. Privately it costs us $158.00 to use a medical transport when she was in rehab. The lift buses only cost $5.70 so it's a big savings.
Here's the trade-off. They take people on a first come, first served basis. Okay, that's not a big deal for scheduled visits that can be set up for some time in advance but when someone is sick and needs to see the doctor today, forget it. The second issue for Mom is getting car sick. Riding in the back of a bus in her wheelchair makes her violently ill so we have to give her anti-nausea medication which causes her to sleep all day and refuse all food and liquid. Probably the worse problem is fitting visits into their schedule. For a ten minute office visit it takes four hours because they pick you up an hour and a half before your visit and have you at the doctor's office an hour ahead of time. Same thing on the return. They pick you up an hour after you are done. For Mom this means sitting in her wheelchair for four hours which gives her a horrible backache because of her arthritic back. In short, it takes two days to get Mom back on schedule in terms of eating and taking meds each time she has a ten minute doctor visit.
I wish I could afford to buy a lift van but it's just not in our budget. I'm thankful for the program and certainly realize why it functions as it does but Mom now violently fights me about going to the cardiologist, podiatrist and her regular physician. She begs me to take her like I always used to do but she realizes I can't physically lift her when I explain it to her. It breaks my heart. Yesterday we had to go to the podiatrist because she was getting ingrown toenails which can be serious for a diabetic. Because she slept all day, she had me up all night. Today I'm doing my best to keep her awake so we can both sleep tonight. All this for a ten minute doctor's visit.
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My younger brother just got back yesterday from a Disney World vacation with his whole family. A year ago I was jealous of how he was enjoying his retirement. He would call or write to tell about his latest cruise or that weekend biking trip or the greyhound rescue board he worked on and the new friends he made through that work. I've learned the hard way not to waste time and energy on jealousy.
I have been caregiving for eight years and since 2006, I have been unable to leave my house to even enjoy a leisurely shopping trip. As the only daughter in a four sibling family, taking care of Mom and Dad fell to me. One day while my niece was visiting with Mom and me in the rehab after one of Mom’s falls, I made the comment about not knowing why I had to give up so many years to do nothing but care for Mom and my niece simply said, “Because no one else would do it.” Those words rang true. I saw so many people there who had no one to care for them and I was so thankful that Mom didn’t have to go through that loneliness. She would say to me, “you’re not their daughter, why do you bother with them?” but I just felt so sorry for them. Without me, Mom would be in the same circumstance. My older brother told the nursing home director when my Mother was readmitted this last time that “Without my sister, my Mom would not be with us today. She brought her home against the advice of the “professionals” five years ago and gave her back her life with meaning and purpose and dignity. I would hardly question anything she chose to do regarding Mom.”
My youngest brother lost his Professorship because of hurricane Katrina and I gave up my housecleaner and took substitute teaching jobs to send money to him and his wife so they could make their rent and buy food. After being out of work for a year, he finally moved to North Carolina to start his professional life over again at age 49. His wife stayed in New Orleans to finish her doctorate and they have been living in a marriage separated by this distance for two years. My sister-in-law told me recently how my efforts to see my brother and her through this time had given my little brother the courage to start over and how I have become the matriarch of the family.
Last January, my nephew who told me at Christmas on the phone that he’d been having severe headaches was diagnosed with glinoma brain tumors and at 37 years of age he had to have brain surgery, radiation and chemo. He has three more months of chemo at this point in the hope that he will stay in remission. He has two young sons. One completed sixth grade and one completed kindergarten this spring. Today my reaction to my brother’s trip to Disney with his son and daughter and their families was one of gratitude. I am so thankful for every day he gets to spend with his son and his young grandsons.
My oldest brother is celebrating his first Father’s Day as a grandfather this year. His son and daughter-in-law adopted a little boy from Guatemala last summer. After years of trying to conceive, they finally had another little boy born on April 1st. As so often happens, life is filled with such joy and such grief. No one gets through this life without a measure of both. I wonder if they would have appreciated their two boys in the same light if parenthood had happened easily for them.
So life happens to everyone. I am thankful that I can be there for my family. I no longer regret choices I’ve made. On the contrary, I am so grateful that I can be there when I am needed. There is no pain more difficult to bare than the pain you watch a loved one endure when there is nothing you can do for them.
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Having never raised children of my own, caregiving has become the toughest job I’ve ever had. The toll it takes cuts across every portion of my life. It is hard physically, emotionally, socially and financially. It is all consuming or at least it has become that for me. Somehow I have lost myself in the process. My day is dictated by Mom’s needs and my mood mirrors hers. I am unable to separate my life from hers and so we live the same life now. She is housebound so I am housebound. She is upset, hurting or depressed and my reactions to these things usually end up with me feeling much the same no matter how much I try to avoid it. It wasn’t that way at first. At first I worked outside the home and all I really needed to do for Mom was shop, cook, clean and transport her to doctors’ visits but over the last five years she has required more and more from me. Insidiously she needed more and more from me and I have given until we now walk the same path. At first I walked with her, then I pushed her and now she relies on me to carry her. That sounds like I do all the work but in truth just eating, drinking, taking meds and keeping her body functioning has become incredibly difficult work for her. She chokes when she tries to drink and wretches and gags when taking her meds. She sits for a half an hour trying to have a bowel movement until she’s all but laying on the potty chair sapped of the strength it takes to hold herself upright on the seat. She has no control over her bladder either and the indignity has robbed her of any sense of modesty. The role reversal we have achieved did not come easily for either of us. She was very controlling and demanding as a parent and I was slow and had to fight hard to achieve my independence from her. She was not easily brought to the stage of total dependence and the struggle has scarred both of us. She has broken vertebra, her pelvis and finally suffered through a partial hip replacement which left one leg shorter than other. That combined with her osteoporosis and Parkinson’s has finally robbed her of the ability to move independently. Her anger and frustration with her circumstances has often been directed at me and I have been only marginally able to deflect it. Fighting the inevitable was difficult for both of us. We both kept battering ourselves into the brick wall of reality and bounced off bruised and defeated until we finally accepted the place that life has brought us to with some wisdom and the knowledge that we did not go this way without giving all that we had in us to give. When the time comes for our life struggles to be at an end, I am quite certain we will both look back and realize that this journey was meaningful in ways we couldn’t comprehend at the time. I expect her struggle will end before mine and I hope I’ll look back and realize how helping her make this journey will have changed my life in a very positive way.
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