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Finding today really difficult

(14 Posts)
bigbluebus Tue 24-Jan-17 13:10:28

My DD died last month. She was born with a life limiting condition and required 24/7 care. I was her full time carer. In spite of her difficulties, she lived to be an adult and her death was totally unexpected.

She had lots of equipment to make my/her life easier. Today they have taken away her bed and wheelchair. Her wheelchair was specially made to fit her. Someone else has also been and taken some smaller bits of equipment and there is a man currently dismantling a hoist from her bedroom ceiling. Her room looks so empty now and it has hit me that she's not coming back. I am bereft. I no longer know what to do with my life. The last 2 decades have been devoted to DD.

Sorry, just wanted to say this to somone who might understand.

MrsSpenserGregson Tue 24-Jan-17 13:11:27

I am so sorry

fiverabbits Tue 24-Jan-17 13:22:01

Even though I have a DS with life medical problems and learning difficulties I can't imagine how I would cope in your situation but I wish I could give you a hug if only to let you know someone is thinking of you. Have you any family and friends to help you through this. Please think of some of the good things that you shared with your DD.

Salemthecat Tue 24-Jan-17 13:24:43

So sorry OP. It must be very painful watching all the things being taken away. Would you like to tell us about your daughter? What did you and her enjoy doing together?

WispyWindy Tue 24-Jan-17 13:41:59

I'm so sorry flowers. I grew up with brothers with disabilities, and all their associated equipment. After their deaths the changes to the family home took a lot of getting used to. Thinking of you as you slowly adjust your life. In time you might find The Compassionate Friends (https://www.tcf.org.uk/) helpful, they have been a source of support for my parents.

bigbluebus Tue 24-Jan-17 13:45:38

DS is here today as he has a day off. He is helping the man with the lifting when required. DH is at work. He did at least acknowledge that today would be a tough day for me as he left the house this morning. I have also paid the funeral bill today and the parish magazine was delivered this morning which had DDs funeral listed in it. There was also an envelope pushed through the door this morning. It had £40 cash in it for DD's named charities. It was from someone who I know does not have much money. I was so touched it made me cry.

DD was very placid. She loved being outdoors and in the hydrotherapy pool. He responses were very subtle. She couldn't talk or sign. You had to know her well to know how she was feeling. But she was loved by everyone who knew her. There were around 200 people at her funeral. She touched the lives of many. We miss her so much. SHe was here in virtually everything we did and the house is empty without her sad

PollytheDolly Tue 24-Jan-17 13:47:17

I'm so sorry. Xx

YokoUhOh Tue 24-Jan-17 13:48:32

flowers for you OP. Your DD had the best possible life because of you. Be kind to yourself today and always.

bigbluebus Tue 24-Jan-17 13:51:29

Thanks for that link whispy. I had not heard of them. There is a contact not far from where I live although no support group locally. I was thining of contacting Cruse Bereavement for some couselling.

DD and our family were in the Children's Hospice system for 19 years. She became too old for their services - which we are grateful for because it means that she lived into adulthood but it also means that all the support that would have been available is no longer available to us.

Gladysmum Tue 24-Jan-17 13:51:47

I am so sorry. Please be kind to yourself. Xx

viques Tue 24-Jan-17 14:07:19

So sorry to hear about your daughter's death. It must seem as though as when all the things she relied upon for her support are taken from your house that a part of her is taken too. but that is not the case, they are just things.

I know that your daughter clearly had a full and happy life, how do I know this? because you have told us how many people came to her funeral, that she had activities she loved doing, that she touched many people's lives, that she was loved and loved you in return. What a fantastic legacy to leave.

Please take some time today and look at some of the many photographs or videos you must have of your daughter, today is a bad day, so look at photos, remember happy times, remember your daughter enjoying the rich life you fought so hard to give her. Be proud of yourself, your family and most of all of your lovely daughter who brought such joy into your life.

choose one or two photographs, look at them, remember the day, have a little weep, have a little smile if you can, cherish your memories because they are in your heart with your daughter. Bad days will come, try to counter them by remembering her good days, because they are the ones that matter.

guiltynetter Tue 24-Jan-17 14:14:47

so sorry to hear about your DD bigblue xx

viques Tue 24-Jan-17 14:17:22

Big bluebus, I have just read your comment about the hospice. I know that technically your daughter came under adult hospice care, but I am sure that if you contacted the children's hospice they will remember your daughter, and although you might not be able to access support through them I am sure they will be more than happy for you to visit, maybe spend a while in their garden ,even chat to staff who knew her and cared for her. perhaps they have a facility for a little memorial to her, a bench or a tree so that you know that there is a connection to her in another place where she was known and loved.

Best practice Transitional care and family support for young adults moving from children's hospices to adult care is still very new, I am so sorry it has not been there for you.

bigbluebus Tue 24-Jan-17 14:42:03

Thank you for your lovely words viques. We weren't on the radar of the Adult Hospice system. They don't have the same remit as the Children's Hospice in our area. DD died in hospital - although she was only in for a very short time. The Children's Hospice did offer us the use of their Snowflake room where we could have spent some more time with DD but we felt we had already said our goodbyes in hospital so didn't take them up on it.

I still have the photos out which we put on the display board at DD's wake. There are loads more to choose from in drawers upstairs. I want to choose some and make a collage and get it printed on canvas so it can go on the wall - but there are so many to choose from I don't know where to start. You are right, there are so many happy memories. Just wish she was still here to make some more.

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