When my Dad was ill with Alzheimer’s, I subscribed to two forums/support groups. I suppose I am not good at letting go because I have not left the groups despite the fact that my dad lost his fight against AD on the 20th of May 2011. On the other hand Alzheimer’s is a terminal illness and there is a lot of synergy between my Dad and Vicky’s journeys. I don’t think I would have gotten through my Dad’s journey if it had not been for the Caring.com group. http://www.caring.com/home-care. The practical advice of caring for an AD patient was of immeasurable help. The members support helped us as a family in understanding the destruction of Alzheimer’s and recognizing the stages of the disease.
So when I received the latest post: “Who is Taking Care of the Caregiver While the Caregiver is Taking Care?” written By Carol Blackwell Alzheimer’s Reading Room, I was delighted. I am in such a depression and totally at a lost as how to get out of it. http://www.alzheimersreadingroom.com/2010/05/whos-taking-care-of-caregiver-while.html
I just knew there would be solid, practical advice in the article.
Carol Blackwell’s opening question is: “Are you taking care of yourself? You can’t be there for them if you aren’t there for ‘you.’ Your mood and stress affects their mood. It surely isn’t easy and life is sometimes stressful and difficult. Here are some things that helped me—you can decide if they will work for you.”
Carol Blackwell wrote “I know you may be thinking you have no time to exercise because you are so busy taking care of your loved one and too tired at the end of the day. I say, that is exactly why we need to exercise.”
Right on Carol. I don’t have time. My days are very long and I don’t get a lot of off-time. Last year Danie and I went for a walk every night. Sometimes the boys joined us. It was great and I miss it. But I have decided that I will start exercising today!
Volunteer for service to others.
Carol Blackwell wrote: “I imagine you are now thinking I am really weird. How can we find time to work for others when we are struggling ourselves? For me, initially, I found it was easy to sit in the house and feel sorry for us. We didn’t sign up for this disease invading our lives, we had just had gotten to the point where we could be free from work constraints, etc. Etc. Unfortunately, sitting in the house feeling sorry for us didn’t help much. It wasn’t fun and served no purpose except to make me crabby and Bob depressed. No one wants to be around crabby people.”
Carol you are weird. I don’t have time to sit and do anything. I have a career, a household to run, two grandsons to fetch and carry, Vic to take care of… For many years I was very involved in working with the less fortunate. I however believe that in the Chinese Proverb “Give a man a fish and you feed him for a day. Teach a man to fish and you feed him for a lifetime.” Done and dusted. One day I would love to do some community work again but for the time being I have to concentrate on my family and their survival. Selfish – maybe… For now that is the way it has to be.
Do things you enjoy—you deserve it.
Carol Blackburn wrote: “What do you find fun and what gives you pleasure? It is different for all of us. I enjoy Wii games—I love the Wii Fitness Plus activities. They are fun. “
Tick. I love my Children and grandchildren. I love the patter of little children’s feet in the passages of our home, the sound of children’s laughter, and their little arms around my neck. I desperately miss my UK grandchildren. I am permanently miserable when I think of them. I miss them with every fiber of my body. Sometimes I am so weepy that I cannot even Skype with them.
I am so happy that Lanie and Tom have moved to Johannesburg. Now we see them and the girls on a regular basis. We spend a lot of quality time together.
Yuri, our youngest grandson asks his Mom whether he can’t come visit his Oumie every day before school…
Liza (the youngest daughter) and her husband have finished sailing around the world. I look forward to flying down to Cape Town to visit with them. As soon as Vic is able to cope without me we will fly off…
Vic finds the noise a little distressing. But the little ones know Aunty Vic is ill and are so good!
Carol is right. I enjoy having the grandchildren around and I deserve to have my grandchildren around me. Grandchildren are the joy of my life! And I love playing Cityville on Facebook.
Carol wrote: “Research has found that taking time to meditate and to engage in yoga is beneficial in reducing stress.”
Maybe one day when I have time… and the energy.
Don’t be a martyr.
Carol wrote: “Martyrs may be noble, but they really aren’t much fun. You can’t do it all and you shouldn’t have to. Find help if you need it. Are you in a support group? Check the Alzheimer’s Association link to fine one near you. Join it—it will help to find others who are going through what you are. “
“Is there someone who can come in for a few hours and let you take a break? Someone from church? A friend? There are people who would love to help us, but we don’t ask. Ask. You owe it to yourself and your loved ones!”
My dearest friend, Gillian, wrote:”I would like to half your work and cares. Put you in a bed for sleep therapy. But I know you won’t trust a soul with your family”. Few people know me as well as Gillian does. I cannot leave Vic. There is that beautiful John Lennon song “He ain’t heavy, he’s my brother”. Vic ain’t heavy she is my baby.
I am trying to get Hospice involved. Danie does help a lot and so do the boys. Esther bathed Vic on Tuesday whilst I was at a meeting. The church and I deserted one another some time back. I don’t have many friends.
People have their own lives. We live in a world where we don’t have time for other people’s problems.
Only a mother who has watched her child suffer will understand the despair of another mother. Will understand how difficult it is to face every day, the depth of despair when you cradle your vomiting child in your arms….to say “Just one more hour baby” when she begs you for pain medication…
We do. Today I watched Rango with the boys. It was so funny.
Cut yourself some slack.
The wise Carol Blackwell wrote: “Everyone has ‘blue’ days. It’s OK to have a ‘pity party’ once in a while. It just doesn’t help to let those days happen too frequently. Also, don’t beat yourself up. We can’t always be calm, patient, understanding and saint-like. We are all just doing the best we can. Wallowing in guilt for occasional impatience won’t help either.”
This week I am truly wallowing in self-pity. I have been guilty of impatience, I have lacked understanding. I am petrified that Vic’s pain and suffering will continue for many more years. It is strange that Vic is having a better week than she has had in three months. As Esther said, her eyes are bright and she has mobilised pretty well. She is less tired… What if this vicious cycle of pain and suffering continues?
Don’t lose hope.
Carol Blackwell wrote: “There IS a cure for this awful disease. Out there—somewhere, someone is working on it. We just don’t know it yet. It will come. Keep the faith, baby!”
Just as there is no cure for Alzheimer’s at this stage there is no cure for Osteogenesis Imperfecta. But there may just be a cure for the adhesions that I believe will ultimately cause a fatal obstruction. Today I found a website where a doctor who claims great success with the treatment of frozen abdomens. On the surface it seems very positive. http://www.prweb.com/releases/2012/5/prweb9432209.htm
Anyone who has ever wrestled with God can understand the bargaining prayer. I have bargained with God all of Vic’s life. If there is a cure I will do this or that…. For MANY years I have put the Church and God ahead of Vic and my family and yet all my love and commitment has resulted in further pain and suffering. I know this paragraph will result in many emails or comments but I ask of you “Do not judge me if you have not walked ten miles in my moccasins!”
So for today and maybe the rest of the week I will hold onto my new hope. “Hope removes the blinders of fear and despair. Hope opens up our minds and allows us to think positive under dire circumstances.” Until I receive a reply to my enquiries…
To all my friends, cyber friends and family thank you for your support and love! Yesterday I considered stopping the blog as it has opened up fears that I have suppressed for so many years. I however think it is something I must do – for myself.
“I’m tired of living but I do not deserve to die. I am motivated by nothing yet I move on. I have nothing but I have everything. I just don’t want to understand.“
Muriel posted this message on Vic’s Facebook page. Today it echo’s my feelings. I am so tired of living. I am so tired of this miserable existence that we call life. Surely, there must be more to life than breathing!
Today was a day out of hell. I had to leave home early this morning as we were testing some systems that are critical to a contract that we are negotiating. I got up with great difficulty, showered, and made Kreemy Meal for my family. Both Jared and Vic need soft foods. I left on time with strict instructions for Danie as to where and when to collect Vic’s morphine syrup from the Pain Clinic.
Within 5 minutes, I was stuck in terrible traffic. Five lanes reduced to two…
Once we reached the test site, the subsystem manufacturers arrived 2.5 hours late!! I phoned Vic to check on her only to be told that she had gotten ill all over herself! She had to bath and I was not home to help her! I told her to take anti-nausea tablets, lie down for 15 minutes, and take morphine tablets again. Once she felt better, she would have to ask Primrose, the helper, to help her bathe. I could not leave the test site.
Danie phoned to tell me – “No Morphine Syrup – come back next week”. Some good news was that Esther came to visit and helped Vic bath. That girl is an absolute saint! Esther also took Jon-Daniel to the movies. I am so grateful that he could get out of the house of gloom and illness.
Then the system failed… The shipment would be delayed by at least another 5 weeks!
Another traffic jam to my next meeting…
An hour and a half later, I left the meeting for home and was stuck in the 17:00 peak hour traffic! A 20-minute trip became a 1.5-hour trip! Arghhhhhh
At home, I quickly prepared dinner. Vic has to have dinner by 18:30 as she must take her medication at 19:00. In my haste I forgot poor Jared is only allowed pureed food so I started cooking (a second meal) some gem squash, potatoes, and carrots for him. I put it through the strainer and rushed off to his room with a tray and his pureed food. I do not know what I did but the next thing pureed vegetables and broken Noritake was all over the floor! I just burst into tears.
I cannot believe that something that I would normally laugh off as an accident set me off. Poor Jared had to eat soup for dinner. He is so tired of soup!
Well today, I am fed-up with life. I am tired to the core of my soul. I do not want to hear that I am doing a great job or that I am strong. I do not want to hear anything! All I want is ONE carefree day in my life!! One day with absolutely NO responsibilities.
Oh dear God, the boys offered to do their Mom’s tablets tonight so I can have a full night’s sleep…What am I doing with my pity party? I have Vic in tears because she is feeling guilty because of the stress her illness has caused me, the boys feel guilty because I am tired and Danie wants to take me away for a weekend so I can rest and relax…How can I ever relax whilst my child is so ill. I do know I cannot afford to cry. It distresses everyone around me.
I need a stronger anti-depressant.
I am going to bed. I am going to feel sorry for myself in the privacy of my room where I cannot cause more stress in my family’s lives. Life is already so hard for them. Tomorrow is another day and we will face whatever life throws at us!
“I’m tired of living but I do not deserve to die. I am motivated by nothing yet I move on. I have nothing but I have everything. I just don’t want to understand.“
Nothing in the world can ever prepare a parent for that moment when the death sentence is pronounced over your beloved child. I remember it as if it was yesterday.
Thank God Vic was in ICU and heavily sedated at the time. Brendan told us in the passage of the Donald Gordon. Colin and I went into shock. We did not ask a single question. We just looked at him … Mute for that dreadful, heart wrenching, moment.
Later that day Colin and I went to Brendan’s consulting rooms and spoke with him. I had so many questions and he had so few answers. He basically said that with the Osteogenesis Imperfecta Vic’s tissue had been affected very badly. The intestines were very poor and she had very bad endometriosis and abdominal adhesion’s. The adhesions were the biggest threat…it would almost certainly cause blockages of the gastrointestinal or urinary tracts. There would come a stage when they could no longer operate or her little body could not take the strain anymore…
Strange Vic knew…when she eventually came round she knew that life as she knew it was over.
When I broke the news to her she was calm. See, all her life she knew that eventually this day would come.
The doctor recommended that we get in touch with Hospice. We did. We had a family meeting. Colin parents, Danie and I and Vic and Colin. Colin went through an anger phase. He felt let down… he thought they would grow old together. They had two little boys aged 3 and 5… So many challenges! So many emotions. So many medical bills! In 2002 Vic’s medical costs were R3.2m. ICU Pharmacy accounts ran into the hundreds of thousands of rands!
With terminal illness come HUGE medical bills. As long as there is money the doctors will operate and treat, hospitals will admit and treat… Colin and Vic eventually lost their home due to medical bills and Danie and I started taking additional bonds against our property.
When faced with the news that a family member has been diagnosed with a terminal illness, many people worry about what they should say and do. They want to help, but often don’t because they are afraid they will say or do something that will further upset the loved one.
Terminally ill persons have the same physical, emotional, and spiritual needs as everyone else. What they need most of all is to be cared about, not just cared for.
Someone said that they do not see Vic anymore as they had already said their goodbyes…they could not handle the emotional trauma of going through the goodbyes time and time again. In their lives Vic no longer lives….
When the time comes I wish I could have a “by invite only” funeral for Vic. If you cannot care about Vic whilst she is alive why on earth would you want to attend her funeral? It has been 10 years and
Physical Care is certainly the most difficult part of the dying person’s journey as far as I am concerned. The control of acute and chronic pain is the biggest challenge that we face. Medication every four hours is a challenge. The days are fine but the nights – well that’s a different matter. It is easier to stay awake until 03:00 and then go to sleep. Danie or the boys are up by 07:00 so I sleep in. Getting enough pain medication prescribed is the BIGGEST challenge of all. Vic’s medical is exhausted within the first two months of the year and thereafter is a nightmare!
The other issues that we have to contend with is constipation, nausea and weakness. Often Vic is too weak to get out of bed on her own and needs help to get to the bathroom and back. Showering and shaving her legs is a challenge. Almost the biggest challenge is Vic’s hair! Vic has a thick bunch of hair and she will not wash and towel dry it! Her hair must be blow dried!
Vic went through many stages – anger, sadness, anxiety, and fear. It is strange that at first we all go into denial. Even now I still do. Vic said earlier this week: ” Mommy, I am so happy I will be around for Jared’s confirmation. I know I won’t be at Jon-Daniel’s confirmation” I immediately retaliated and said “Of course you will be baby. You just have to keep fighting” Why did I feel compelled to make an empty promise?
Vic’s emotions are real. Touch is comforting to her. She loves being hugged, touched, kissed. She appreciates the truth.
If it had not been for Vic’s positive attitude towards life and determination to bring up her boys herself, she would have died many years ago.
Vic is now tired and ready to die.
Vic regrets not going to Italy. She desperately wants to go to Chaka’s Rock one more time. She wants to see her boys grow up. She wants to make a speech at their 21st birthdays!
As a family, there is nothing unsaid. We love Vic and she knows it. She will continue to live even after she stopped breathing. We will honor her wishes for the boys and keep her memory alive. Vic may stop breathing one day but she will always live in our hearts.
The four most common fears of the terminally ill are:
- That death will be painful.
- Loss of dignity and control.
- That loved ones will be damaged and unable to manage
- If children are involved that they will not be looked after properly.
Death will be painful
Vic the same physical, emotional, and spiritual needs as everyone else. Her biggest fear is however the pain that will be involved in her inevitable death. As distressing as the physical pain, Vic battles constipation, diarrhoea, nausea, vomiting, weakness, loss of dignity and loss of appetite.
The average physician and pharmacist’s concern is addiction! So what? Addiction at this stage of the game is the least of my problems. I do however believe that Vic has become morphine resistant. In hospital last week Pethidine and Perfalgan worked well. This is one of the reasons why it would be great to have Hospice involved in her pain management.
The Pain Clinic is great but they see Vic every couple of months. In the past 10 months I have collected her monthly morphine script on 7 occasions. Thank God they have enough empathy for Vic and enough realisation of her health situation to give me the script. The problem is how much more than 400mg of MST (morphine) twice a day can they prescribe?? Imagine if I had to drag her to the pain Clinic every 28 days…
I honestly believe that family involvement is imperative with someone as ill as Vic as she or any other terminally ill person simply cannot manage these situations alone. Family members closely monitor the effectiveness of pain management. I take Vic’s vitals a minimum of 3 times a day. Her blood pressure and heart rate are clear indicators of where her pain levels are at. I know her body better than any other person, nurse or doctor… I cannot imagine a terminally ill person having to fight for pain medication.
Loss of dignity and control.
Vic desperately wants to participate in ordinary daily activities such as being able to eat with someone; to walk to the bathroom and use it in private, unaided; to talk with a friend; to watch a favourite TV show; to hold her children.
Imagine just for one minute your mother having to help you bath, apply deodorant, dress and undress… Vic has to endure this indignity every day of her life.
Nights are especially poignant. Sleep difficulties abound, not only because of physical pain but also because of fear of sleep, fear of not awakening out of that sleep. One night spent with a dying person could teach all of us, in some measure, the depth of human loneliness, anguish and fear which our own dear ones experience in the brief span of life left to them. Vic sleeps badly at night. She wakes every two hours from pain and then she is too scared to go back to sleep. She refuses to take a sleeping tablet. At night Vic is at her most vulnerable… I am so scared that she will fall at night whilst we are sleeping.
What if Vic is nauseous and chokes in her own vomit sleeping?
That loved ones will be damaged and unable to manage
Vic worries about the family’s ability to cope with her illness and eventual death. When Jared whispered to her “Mommy, I want your face to be the first thing I see when I wake up from the operation” he validated her fears…
Vic often says “You know Mom I worry how Daddy is going to cope with my death…” or “Mommy, do you think the boys will cope without me?” or “Promise me you will go for counselling when it is over…”
No amount of reassurance will comfort her…Vic in time will have to let go. She knows how deeply we love her and what void her passing will leave in all our lives. If you lose a marriage partner it is possible to find another partner and experience love again but if you lose a child or parent…how do you replace a child or parent?
Vic is quite hard on the boys (for their own good I must add). She always says “I am your Mother not your excuse”
If children are involved that they will not be looked after properly.
Vic believes that no-one can ever love the boys the way she does. That is true. I am not a particularly “oochy goochy” person. At times I believe I failed Vic as she has an emotional neediness that scares me. I attended 12 different schools in my life and maybe this is why I battle to form emotional attachments. I don’t have many friends. My family is everything to me.
Vic however often says that she is happy that she moved back home as she has seen how settled the boys are. They are truly happy living with us.
Vic knows that I will care for the boys for the rest of my life. We will guide them and provide for them in every which way. We love the boys with all our hearts.
The question that remains is whether she trusts us enough to let go of this pain filled life where she has lost all control and dignity? I pray that she will…