My wife Judy and I planned to move from the community in which we had lived for about 20 years. There were many reasons for this but it was mainly to be closer to her family. Her sister and 2 grand nephews would then be only 20 minutes away and Judy’s daughter (my step daughter) and the 3 granddaughters about 40 minutes. This would save everyone time for visits and increase visitation time.
Judy had been having problems tripping and stubbing her toes for a few years. Late in the summer of 2007 she fell and could not get up for awhile. She thinks it took an hour before she regained control. She told me later about the fall and I suggested she go to a doctor, which she refused to do. Like a lot of people she did not have a good relation with our family Doctor. She would not go to our Doctor at all.
We decided to make the move in late 2007 but Judy had a cold in December that lasted until late January. The cold symptoms disappeared but she now had a raspy voice and insisted it was because of the cold. The girls came for a visit in February and we all tagged up and got Judy to go to the Doctor. Our Family Doctor had a Locum who Judy would see. So the adventure began to the next Doctor in London, a neurologist who arranged a test .The test was at University Hospital London, Ontario. Judy was taken in to do the test, an EEC I believe. She was brought back and told me she met a Doctor named Strong and he told her they would be meeting again.
We sold our house in our old community and bought another with Judy having another fall. This time I was present and she was using a cane due to a weak feeling in her legs. She blamed the cane and said that she tripped over it. How many times she has fallen since I am not sure but the latest was this morning.
So we moved to a new community and Judy was scheduled for a MRI at St Josephs in London 4 days after we had moved. On June 1, 2008, we saw the neurologist and within a few weeks of this test, we were told that the diagnosis was Motor Neuron Disease as previously mentioned with a possibility it would be changed to ALS. Although at this time I don’t think Judy was hearing this as she was asking questions like… “Is MND genetically transferred” knowing our daughter had some worries. We finished with the neurologist and were scheduled for a late July appointment with Doctor Strong at University Hospital. I explained to Judy about the diagnosis that had been given to us and she insisted that I was incorrect.
We kept the appointment with Doctor Strong and he gave her the diagnosis of ALS but she was not taken aback and accepted this. But maybe Judy just needed to be told by the “big guy”, Dr Strong. Belief is a strange thing with wonders and sorrow. Unfortunately it was sorrow this time...
At this point Judy could navigate with her walker although she could not move fast or in crowds. So when we went anywhere we would use a wheel chair in Public.
Time passes and she can maneuver in the house and I am working full time but no overtime although it is available to me. After our anniversary in September 2008 she said she couldn’t do the cooking anymore so I take that on, but she continued the doing the laundry.
ALS has a strange way of acceleration. Judy has times where she is contented and no advancement in the disease; then we go down a hill at break neck speed like the days on a toboggan just waxed over a fresh layer of icy snow. We have times of great joy and sadness in the same moment. To have her home is wonderful and scary, loving and arguments, kissing and hugging, sad and mournful.
A year and a few months have passed since the diagnosis and prognosis and many decisions have been made. Family issues arise amid the scare of the disease.
Back to the housework. Judy told me just around new year’s 2009 that she can’t do the laundry anymore as she is unsteady on her feet on the stairs and the basement floor is not level. The walker won’t work well down there being unlevel. So I take that on as well as the cooking for which I am already responsible. I have been making her lunch since September as she is scared of hurting herself in the kitchen. We do have a housekeeper… a gift from Judy’s sister.
My stepdaughter and grand daughters are concerned about familial ALS although Judy is the first one known in her family to be diagnosed with ALS. We mentioned this to Doctor Strong and he told us if Elizabeth, my stepdaughter wants to, she could accompany us to the ALS Clinic. Doctor Strong said he would give her a once over to see if she has any tell tale signs. She has not taken him up on the offer but I think she may in November. It would be a relief for Judy as well. Judy is naturally worried about leaving us all when her battle is over.
I am home looking after Judy full time now as she can’t be left alone anymore. Her Community Care Access Centre Manager, Lynda Clarance, was a nurse so she really structured this new arrangement. She cannot help herself up or down. I dress her and undress her but it is strange having a full size Barbie doll. But seriously, she is upset because she cannot do it herself. Judy still puts on her own eye makeup but she used to do a full routine of all make up but now it is just the eyes. She is not able to put on makeup the way that makes her happy. I help her in getting water for face cleaning, creams and fetching her toothbrush and toothpaste. Judy now uses a commode. I wheel it in and she does her thing and washes up. Then I clean up the commode for next use.
Judy does not sleep well now at all and her appetite is small. We have a new recliner and I wish we had gotten it last year so she could have used it then. The motorized chair lift is good but, hindsight being 20/20, should have gotten it back in 2008.
Judy has decided that she wants no feeding tube or air tube. She has a “do not resuscitate” order in her CCAC binder. That is for the EMT that may come to assist. She has been very brave and stoic although I wish she would not be as stoic.
After twenty-four years together, here are some of the things I miss.
Her voice… she used to sing along with the radio. Judy does not like the radio on anymore.
Going shopping with her… she does not like to go out at all now.
To be kissed back… with puckered up lips from my girl Judy whose lips don’t pucker anymore.
We used to shower together… instead of now just showering her.
We still hug…but she is so small it’s like hugging a small twig and I am scared I might break her if I hug too hard.
Judy’s likes and dislikes changed though the diseases progression… such as foods and media. We use to eat a lot of fresh veggies and spiced foods. Now the diet is more over-cooked mushy foods bland to my pallet but palatable to Judy. Judy use to be interested in the Internet, emailing, reading the paper, radio and watching television. Now, television seems to be the only thing that she is interested in but a lot of news programs, HGTV, TLC, Food Channel and she really likes all the CSI series.
The other thing is, she naps a lot now because she does not sleep well at night. She has a new case manager with CCAC as she is now a Palliative care patient, Judy is having a few more problems with breathing as there is not a lot of air in the right lung. She has a blood clot in her right leg. Fragmine shots which I give her at 1:30 pm. Weakness is more severe in her legs and hands. She is looking forward to her Birthday this Thursday August 6, 2009. This will be her sixty sixth birthday. She had a rough week last week sleeping; and her Aunt Shirley Acres passed away from Liver Cancer in Judy’s hometown of Ottawa. Judy has had a sad week with more crying than normally happens with ALS.
Judy did sign an organ donation form for Doctor Strong for her brain and spinal cord when she passes. She did say after signing the papers make sure I am dead and not sleeping. She has given me such life, love and laughter.
I would only change a few thing from over our years together such as… when arguing saying I wish you would be quite… or…. please don’t sing that I want to hear the singer.
Be careful what you ask for because it may come to you!
Please note we now have a family doctor, Dr. Edwards of Stratford. This is in thanks to Lynda our former case manager with CCAC. We are both thankful to CCAC and their work.
From James Farmer
Care Giver for ALS patient Judith Ann (Burt) Farmer
PART TWO
How things change in such an incredibly short time. In 4 weeks Judy’s abilities changed dramatically.
I have been watching and helping but not seeing the reality of what was happening.
Judy had a rough weekend 3 weeks ago. On the Sunday she was unable to walk in the morning because her knees hurt and would not support her…. not even for a pivot transfer. Although by bedtime which is an early 9 pm she was able to use her walker to go to bedroom. About 8 days passed and Judy slept fine but could not walk in the morning or at bedtime. The next day she could. Her knee just would not work. Then we had a few days of what I considered normal. This past Monday August 17, 2009, Judy woke up having had a bad nights sleep again and could not walk again and has not been able to walk since. She can assist with a pivot transfer but it takes a lot out of her. Pain levels started to increase in her tailbone, and in the leg where she has a blood clot when she is lying down.
Judy had her Occupational Therapist in on August 12, 2009, doing an assessment. Susan Rice, O.T., asked a few questions. Judy has had a rough week and on Friday she had a shower and looked smaller to me. This last week Judy has not slept well other than one night. She is in pain and hurts all the time but will not tell the Victorian Order of Nurses. She is trying to be stoic again as that is her way. I let the nurse in on the issues of pain and not able to walk anymore. The Nurse, Ruth Ann, suggested we call the Doctor for a morphine patch as the liquid gave her a dry mouth. I called Doctor Edwards office. He was away but Doctor Moore was covering and would call me. I got a call from Doctor Moore and she asked how much Judy weighed and how much fat is on her. I tell her the weight is about 55lbs to 60lbs. So we get a caplet that we can take apart and put in yogurt to reduce the dry mouth she got from the liquid. The new morphine is time release.
Now we have her comfortable somewhat at night, and during the day her tailbone does not bother her so far. V.O.N. is due in this weekend to do an assessment on pain, as pain control is what we are trying to achieve.
Judy has a New Case Manager with CCAC, Jane Downie, palliative care specialist. We have a few new people coming in and out; PSW Roberta, Suzan and Anne Marie. These are people who dress Judy and help with her morning routine. Pam and Nancy come in Tuesday and Friday respectively for respite care. I get out also. I get some shopping done on Tuesday and on Friday I do things for James. I would do things like hit a bucket of golf balls, go for Doctors appointment, take a walk or bike ride around town.
My time alone is of value so I go and clear my mind. If I had a dog I would walk the legs off the poor beast. Speaking to others may help but with me I also need to be heard. I seem to have taken to writing as a way of being heard. In life I am a quiet spoken person, polite, others in my life come first.
It has been 2 weeks since I wrote on this part of my Judy’s story. Where to begin again is the question. Pain control coordinator came and explained to Judy just over 2 weeks ago that it is important to use the medications and other medications for side effects.
Morphine causes some people, Judy being one, to be constipated so we use the drug and end up using an enema to end that. She is starting to have more issues. She can no longer sit in her chair because sliding out of it seems to be a problem. She never actually slid out but she felt like it, that was last Saturday 29th o f August.
She is scared and wants to stay in bed and that is okay so we work with it. She is able to pivot somewhat to go on the commode.
Sunday August 30th Judy is looking very pale and a bit grayish in colour after the Granddaughters and Elizabeth leave. I am scared and not ready to say good-bye. Doctor and VON were in on Monday August 31st. When the Doctor comes to the house we discuss necessities of care and I learn that since she is unable to eat and drink well, her time will be short. Patch morphine is put on order and Judy would need to swallow pills for a few more days. Tuesday September 1st 2009 she is panicking because she can’t swallow first thing in the morning. I call VON and we get the morphine pumping real fast, all others prescriptions are cancelled out. VON overnight staffing from 11pm till 7am. Judy has an appointment with Dawn Craig of Family Services of Perth-Huron. Judy is worried that God won’t let her in but Dawn helps her out and she is content. Elizabeth and the girls come again. They were here Sunday and see an even worse decline from last weekend.
Wednesday September 2nd 2009 Elizabeth comes. We have been trying to get her to see her sister as I mentioned in the first story family issues. Sandra is not to be found. Sandra calls on Wednesday late afternoon. I believe she wants to come later but I tell her she better come sooner. She comes early afternoon September 3rd 2009. Judy is not doing well and has two visits a day from VON. We reoriented Judy after Sandra’s visit. She was starting to get sores on her side. Lean her on her side, her favourite sleeping position. She does not come around after this. I wash her after I had my supper and put body lotion on her. On Monday I had promised to trim her toes and buff the rough nails. As I start this I realize I like taking care of my girl and become lost in doing the job. Her TV was on HGTV Restaurant Makeover. I was finishing up the buffing on the last toe then realized she had passed away. VON is called but is due at 9 pm and it was just about 8:40pm when she passed away. I sit with her and say goodbye. My heart is broken but her spirit is now free.
I sleep last night with help of a conversation to my little sister. I wake refreshed but with lots to do and know that my girl has donated her brain and spinal cord for research with Doctor Strong at London Health Science Centre.
My last thoughts are to thank all who helped my Judy, she appreciated all the help we received. Judy died on September 3rd 2009 at 8.40pm after a great battle she put up against ALS.
Thanks for sharing our story.
Yours Sincerely,
James D. Farmer
Stratford, Ontario
September 11th, 2009
"The norm we knew is not the norm we will know." C. Weiner
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