Last weekend was full of visitors. I felt much less distressed with company. But my daughter was very unsettled and difficult. She has multiple special needs and is usually very sociable, but she screamed throughout while friends were here.
She was very confused and insecure when my husband died 12 weeks ago. We spend our time sitting together I think she has got used to my attention 100% of the time.
This weekend we have no visitors, she has been calm and settled. Not such a good time for me, though. The hours feel like days. My mind keeps drifting to what life was like before he died, what we âshouldâ be doing. How happy my life was and how sad it is now.
There isnât a solution to this. I live down a country lane, at the top of a steep hill that is just a rutted farm track, impossible to push a wheelchair down. I canât take her out in the car on my own, itâs not safe because she grabs me for attention, and her wheelchair is too heavy for me to lift into the boot anyway.
We have been out into the garden a few times today but she soon gets bored.
Sorry, I donât know why I am even posting this, but I am torn between giving her the attention she seems to need and my need for distraction.
Xx
I canât even imagine how hard it must be for you, alone in this and with little to no space for your feelings. Does she fret if your attention is elsewhere while you are sitting with her too, so you canât find things to occupy the mind at those times? I wish I had some good advice, just know that you have been heard and that I emphasise so much. 
Thank you for your reply, I really appreciate it.
Sometimes she is lovely company, and even when she is demanding I wouldnât swap her for the world. I have to give her all of my attention sometimes. I have just put her to bed and it is the first time I have had any time to myself since 5 am.
I usually roll with the punches, but not having my husband here now means that even going to the loo or answering the phone/doorbell is often a challenge.
I took her into the garden several times today, hoping to be able to get a few outside jobs done, but I had to keep breaking off to sit with her for a few minutes. It is exhausting, I spent longer putting up a parasol, getting her drink and radio etc than I spent doing jobs. Then she got bored and I had to put it all away again!
However, it did fill some time.
Xx
Willow it must be so hard to cope with your grief not being able to get out and do things. Your caring for your daughter is wonderful. Is there a day centre anywhere your daughter could go to for you to have some time to yourself? Maybe a silly thing to say perhaps your daughter wouldnât cope being with others. Any other family who could lend a hand sometimes?
You are so supporting of others on this website. Hope someone can come up with some helpful ideas
Hi Woolly, Thank you. She does go to a day centre for a few hours sometimes. Then I am able to get jobs done, go to the dentist, etc.
I love her to bits and feel dreadfully guilty that I seem to be grumbling. Weekends and evenings are difficult for her. She misses him so much. I do have a son who does his best to help but I donât want to lean on him too much, I tell him we are fine. I donât have any other close family. Both parents and one sister died, my other sister has dementia. I have a few friends, but they have their own families.
It was so much easier when my husband was here. Itâs the little things, like someone to answer the door or phone while I am busy showering my daughter, or sitting with her while I am cooking dinner. Getting her out of the wheelchair and onto the stairlift with nobody to move the wheelchair out of her way. If only I could grow another pair of arms!
Sorry, I am rambling. Itâs just the never-ending complexities of caring. I didnât appreciate how much more difficult it would be coping with the practical stuff alone. Xx
Hiya Willow you are not complaining at all. It must be so hard and exhausting on you, then trying to deal with your grief. Which in itself is exhausting. Dont ever feel guilty, i wish we all lived closer to offer each other help and support. As i have learnt to my cost you cant rely on family. Hugs Jo xxx
I understand and of course we would never swap out a loved one, no matter what. Youâre doing such an amazing job. I can only hope for more moments of peace for you and send you strength and light. And donât feel guilty for talking about it, we are only human and you need a place to vent too!
Hi i just wanted to say you are not alone. I lost my husband 4 weeks ago and i have 2 young children (3&7) with additional needs. I feel so overwhelmed and like im drowning especiallywhen im alone. Its so hard to balance what everybody needs just remember you cant look after your daughter if you dont look after yourself first. Is there any way you can call someone and have long adult conversations whilst still being just the 2 of you
Thank you. It is just so miserable, isnât it?
I really appreciate your response. All the usual âmake a new life for yourself, join a club, go to evening classes, is just not possible. Not that I have the energy or inclination anyway.
But I am so grateful that this site, and the lovely people that use it is here. It is a real support. And I am grateful.
Sending hugs to everyone in pain. Xx
Very miserable and makes caring for someone else even harder than it used to be
Morning Willow the old saying walk in my shoes before you judge comes to mind. I know ppl say things with the best of intentions but its not always as easy as they think.
You are doing a brilliant job at caring for your daughter,just a shame friends family dont give you the support without you having to invite them round.
Hugs Jo xxx