My grief is appauling, I have things going round in my head. A friend suggested that I write a letter to my mum, and then I thought other Parkinsons carers and families will understand what I'm describing. So here goes. I hope that our experience does not upset anyone, as Mum had more complications that I havent gone into details about. But watching your loved one with Parkinsons is heart breaking for families.
I am so proud to have had the honour of you being my mum, not only that but my sons have had you as there grandma. You have always been there, so strong, rushing around, working, helping out with the kids, you never stopped. Not even when you had your heart attack, you recovered. You watched your grandkids grow up with such pride, Life continued.
Then I remember about 15 years ago you said you kept having funny sensations in your legs, we all thought it was maybe being on your feet too long. Life continued, we had fantastic family holidays, spoiling the grankids. Years passed, these sensations got worse and you were diagnosed with parkinsons.
You were given drugs they helped, none of us knew what we were in for. You seemed to be coping fine, you helped me pack up and move house, nursed me after an operation. Then 5 years ago there was a huge change, drugs were then changed. We took you on a cruise and I noticed the start of the freezes, I saw your embarresment and frustration, I realised that you were hiding a lot from me, but you couldn't hide it anymore.
You continued going to the clinic and seeing the OT, your parkinsons nurse and the consultant. These visits were to me not often enough. I realise that there are other patients with the same problems, that deserve proper care. We then knew there was not enough funding for Parkinsons patients. We struggled on, you started to fall a lot, the drugs were taking there toll on you and you would fall asleep standing doing the dishes, when you were on the phone in mid conversation, we would call the G.P. and nothing ever seemed to get done. I remember seeing all the bruises all over your body caused by your falls. The black eye when you went right down on your face. We were on the start of losing our mum and grandma.
You then seemed to go into deep sleeps that would last for days, so I bullied you and dad to let me come to your next visit to the clinic. I got the fright of my life as he said "it may be time that you consider looking into care homes" I know you and dad were trying to protect us. We had read all the information on the website, we knew what was coming but it still didn't prepare us enough.
More deep sleeps happened, they lasted longer, you wouldn't respond when you were in what we started to call the coma's. Eventally 6 months ago they finally admitted you after a bad fall, and the freezing. I drove straight to the hospital in a panic. I got to the ward my sister was there holding your hand, you weren't responding. They stripped back all the drugs to start all over again. That seemed to work, they had got the balance right, you were then transferred to another hospital, it was an assessment ward. You hated it as they did not understand that you couldn't instantly move to go to the toilet, they would say to you to "get a move on as they had another 22 patients to attend to. We were disgusted, I was so angry but I kept my cool. I talked to the nurse in charge and she explained that they were s short staffed and to be honest they only had a basic knowledge of Parkinsons!! We explained that when you froze we would talk you through it, remember turn of the brain just like when you stall the car, start the engine again, then left foot, right foot. After 7 weeks we got you out of there.
At home, Dad put in a stair lift, and the Care Manager had put in place a months care programme to settle you back in. All the aids started to appear, it made life easier but we could see you going down fast. You never once cried in front of us, never complained you only said "that it was horrible and you wondered why you had got it".
Things got worse my sister visiting the house every day, me feeling guilty as we lived out of town. Dad started not being able to cope. Your deep sleeps started to last longer, then you had a prolapse of the bowel, you were admitted back into hospital. We drove across, and you were in one of your sleeps, but you were so distressed, shouting, screamimg and crying in your sleep, it was horrible. You came out of it, you were sitting up in bed, and asked where we had been as you had been waiting on us, you were confused and had been hallucinating, we knew it was the drugs, but it distressed you, as they were so real to you. We were then pulled aside and told you were really poorly, your heart was weak, blood pressure so low and they would not operate as it was dangerous. You were then transfered back to the assessment ward. Our hearts sank.
They witnessed your deep sleeps that were now lasting for 3 days, your lips were going blue, your ankles were swollen, and your freezes were more frequent. They worked with you this time, you pleaded that you wanted home, we all knew that you were getting worse, there was days when you said you couldn't get your legs to work, the boys even struggled to lift you. I tried to say that you needed more care, but you wanted home.
A care package was put in place, you got a discharge date, my sister and I worrying about you. Mum it was awful. You had 3 good days and then 3 sleep days. You didnt remember anything. Your discharge date got closer. We would come across at the weekends to give Dad and my sister a break, you were due to get out on the Monday, the Friday before my sister called me to say you were in a sleep,it lasted until the Sunday. You looked terrible, your lips were blue, you were struggling to take a breath. I said to the nurse that they couldn't let you out like that. I was told then that it's just the way your mum is. You looked at me with your pleading eyes, I knew you wanted home. So home you went.
Mum you had 3 days, then you went into a sleep, the carers called the ambulance as again you did not respond, you woke up back in the hospital. I never saw you awake again. Dad got the call to gather the family, my heart sank. I called the kids, as they had to travel. They waited till we were all together and then told us that your heart had stopped, they had revived you but it was your time. We took it in shifts to sit at your bed side, we held your hand and talked to you, we talked about all the fun things we laughed we cried. You hung on till the Tuesday. The boys, Dad and my sister had been with you all morning, my husband and I were on afternoon shift, the boys decided to stay. I held your hand and suddenly there was a change, I looked at my husband and he prepared us saying it's time, your youngest grandson called the family, your eldest had your hand, I had the other. I didn't stop talking to you, you took your last breath so peacefully and with dignity. The doctor came in and noted time of death, and a few minutes later ,my big sister arrived and she had just missed you.
Mum I'm torturing myself as I don;t know if I said the right things to you, none of us wanted you to suffer the last stage of Parkinsons, so we were happy it didn't get you. But my heart is breaking as I miss you, I keep playing it over in my brain, could I have made your passing easier, could I have fought harder with the hospital about releasing you. Did we do the right thing.
I can't change anything for you now mum, but maybe I can do something for somebody out there, a fellow Parkinsons patient. In memory of you we have requested family flowers only with donations to Parkinsons UK. We will do as much fund raising as possible, as we know that Parkinsons is so under funded, the teams do what they can, but it's not enough.
You will always be deep in our hearts.
Your loving daughter.