My Mother In Law passed away from Sclerderma yesterday
Posted 29 March 2012 - 11:18 PM
I am obviously new to this forum and to be honest never even been into a forum before today!
My Mother In Law Michele O'Grady from Melbourne, Australia passed away yesterday morning from Scleroderma. She had been fighting the battle for 10 years and her body had just had enough.
It is still sinking in that I won't see her everyday.....
She had a fantastic personality and a generous soul.
My husband is really struggling with her passing. He is an only child and his Father isn't in his life so his Mother meant the world to me. We have one beautiful 20month old boy who she just absolutely adores and I am due for our 2nd child in August this year. Who she will never meet...
I had never heard of Scleroderma before and not many of my family and friends had either.
In the end she was in terrible pain, on oxygen 24/7 and on so much medication she could've opened her own pharmacy. She used to love going to the beach and driving around but this terrible illness took away her freedom.
She moved in around the corner from our house in November 2011 and she and I started to become very close. I saw all of her struggles, went to every specialist appointment, gave her her medication, cleaned her house and cooked her dinner.
How do we move on from here??
I am interested in speaking to anyone else who may or has been through the same circumstances.
Posted 30 March 2012 - 03:24 AM
Welcome to the forums and I am so sorry that your mother in law has died. I have had scleroderma for 5 years now and have lost 2 friends to it and have 2 others who are seriously ill because of it. There's also the loss to me of the life I had pre scleroderma so all I can say is that loss goes hand in hand with scleroderma.
However, there are also gains to be had and from what you have said about your mother in law I am sure she was someone who took the gains when she could. For me the biggest gain is the people you meet that you would not have met otherwise, wonderful people who persevere and are willing to share their experiences and themselves to benefit others with scleroderma. It also gives you an appreciation of the little things in life and your family and friends. Let me tell you that to your mother in law her relationship with you would have been pure gold.
It's also encouraging to hear of someone who lived for 10 years despite scleroderma's best efforts, not long enough for you I realise but for those of us struggling with this disease 10 years is a big 'ole chunk of time!
Take care and keep posting.
ISN Sclero Forums Assistant Manager
ISN Video Presentations Manager
ISN Email Support Specialist
ISN Sclero Forums Support Specialist for UK Scleroderma
International Scleroderma Network (ISN)
Posted 30 March 2012 - 10:05 AM
My most heartfelt condolences and sympathy for your loss. May you and your husband find comfort soon. Losing a loved one, particularly to a disease that is unrelenting is difficult, but hopefully, both you and your husband are able to visit the special memories of her and cherish the memories of love all of you had for one another. What a very special person and how wonderful you all shared special time together. I have a feeling she will have a presence in your lives...through your children, as well as your husband and what a special gift.
I just want to say that I am so glad you sought us out because the support, concern and empathy is very powerful here. We understand how difficult this time must be for you, being those afflicted, as well as those who are caregivers to those afflicted. Our community is FAMILY and we don't take such news lightly and our purpose is to comfort those who are not only battling Scleroderma, but reaching out to caregivers who are seeking information and becoming empowered as advocates.
I wish to send you and your family Loving Hugs of ample supply to help comfort you all during this time.
Posted 30 March 2012 - 01:09 PM
Firstly let me welcome you to these forums.
I'm very sorry to hear about the tragic loss of your mother in law. Scleroderma is a very unusual illness and therefore I think this can make it much more difficult to explain to family and friends. Sadly, I'm afraid it does take it's toll and it sounds as if your mother in law was incredibly brave and generous and will be very much missed by all who loved her. It must be extremely hard for you, your husband and your young child to come to terms with your loss and I do hope that as time goes by you will be able to remember the happy times you had with your mother in law and be able to think of her without feeling quite so sad.
I'm so pleased that you've found our forums and joined our community; as Susie has said you will find a wealth of help and support here. As Amanda has said, one of the very best things to have come out of having Scleroderma for me, is meeting such lovely people whom I would never have known had it not been for this bizarre disease. I hope that our community can offer you the same sort of enrichment and comfort.
Please do keep posting and let us know how you're faring.
My best wishes to you and your family,
ISN Sclero Forums Manager
ISN News Manager
ISN Chat Host
International Scleroderma Network (ISN)
Posted 02 April 2012 - 08:37 AM
I read your post the other day but needed to take some time to think about it before responding...
First of all, you did everything you possibly could for your mother-in-law. Know that.
Secondly, everyone grieves differently. You posted very soon after this happened. I'm sure there are many things going on right now. Give your husband some time to honor his mother. When fitting, think of great stories about her to remember and when the time comes, do fun things with your son and husband.
My mother-in-law died from scleroderma as well a couple of years ago. Years before I was diagnosed we received the call from a sister telling us she had sclero. Having never heard of it before I looked it up and said to my husband, "this doesn't sound good." She had already survived inoperable Nasal-pharengeal carcinoma and the treatment nearly killed her twice, she was on a feeding tube for months at one point and hospitalized for weeks but bounced back. Then she was diagnosed with sclero, little by little she declined, moving from living near us by herself to a senior building near one of his sisters to a care center. During this time, I was diagnosed with scleroderma and went into renal failure. As I watched her go from walking to a wheelchair, to diapers to dementia I would think, is this going to happen to me? But she was my inspiration. Although she lost her immediate memory and most of her teeth she never lost her sense of humor! She died right before she turned 90. My husband was the only boy of 7 children and very close to his mother, his father wasn't in his life either. He adjusted well to her dying, knowing that he had done everything he could for her and is still a devoted son, taking care of her gravesite. Some of his sisters are still grieving.
We talk and laugh about his mother all the time. When people comment about my different colored nails or colored streaks in my hair I laugh and respond, "as my mother-in-law used to say, anything for attention!" With 7 kids in a very whacky family we have many funny stories to tell and great memories. My husband has an amazing way of looking at the lighter side. He takes after his mother!
Keep the memory of your mother-in-law alive by talking about her with your son and future child and showing them pictures. My niece never met my father but she still talks about Grandpop Harry. Great grandchildren still hear about my mother-in-law. Just because she is physically not here does not mean memories of her need to die as well. If grieving becomes unbearable, seek the help of a Grief and Bereavement counselor.
Right now take it day by day. There is probably a lot to be done dealing with the details that go along with a person dying.
My thoughts are with you and your family at this time.