Hi

Being able to access free equipment is great but obviously the downside is the wait.  It would indeed be lovely to get your Mum out if she feels up to it and wonder if you have a wheelchair already. As for getting her up/down stairs this would seem to be very difficult given her lack of mobility as well as you needing to protect your own back when lifting etc.  When my husband was unable to manage the stairs we had a bed in the living area and this also meant visitors could pop in and we had assistance from local community nurses when required  (it did mean the use of a commode too as our bathroom was upstairs).  I hope you can find a solution so that you can make the most of the summer months whilst you care for your Mum. Regards Jules

Hi Jules,

We do have a wheelchair, which we got last Friday. I did pitch the idea of her moving into the dining room and getting a commode. I'm not sure if she was joking when she was considering it. I may have to re-pitch. If she moved into the dining room she would be surrounded by books with access to a chest freezer. We would maybe need a zimmer frame also, which I have suggested before for moving around the house. She has had a couple of falls, one of which was in the bathroom. Luckily she works for the social care department with the council and one of her workmates/friends has put in a referral for a community alarm. Someone is coming today about it. It's weird, my Mum's only 51, and doesn't look it. Our house is starting to look like a sheltered house where an 80 year old lives. I didn't think she was going to get old so fast. We're also getting rails on the outside of the front and back doors to help her get in the house.

Thank you for your reply

Linsey xxx

Hi Linsey

It is certainly not easy watching someone so loved and young fighting this rotten disease.  Good news that you have access through your Mum's employers which is making it a little easier to get hold of what you need for her mobility needs.  She has raised a lovely daughter and you should be very proud of yourself as this is not an easy journey to follow.  Wishing you both all the very best. Jules x

Thanks Jules. We just had a community alarm installed, which makes me feel a bit better. Especially since I'm going to be out of the house tomorrow for a few hours. Waiting for the McMillan nurse to come for a visit about helping her with her pain. Once that's dealt with that should help her move around more and strengthen her leg and arm muscles. Fingers crossed this happens soon.

Linsey xxx

Hi Lindsey

I am sure having the community alarm fitted will bring some peace of mind when  you need to be out and you will certainly benefit from having some me time too (I know how hard it is to come by when  you are a carer).  We had a key safe installed outside so the community nurses could get in when they called (as my  hubby wanted me to carry on with my little part time job) as his mobility was  limited in the latter weeks.

Hope the nurse will be able to help with regard to assessing your Mum's pain relief needs as it is a big help to know that they are kept comfortable and our palliative care team were amazing in this regard. Do not hesitate to talk to your Mum's GP too if the visit is a little way off.  Take care  Jules x

Hi Jules.

We've had quite a lot of traffic in here today. First of all, Mum will be going to a hospice to get her pain and medication sorted out, just waiting for the ambulance now. Her stairlift should only take a couple of weeks, thank goodness for that! Her workmates are looking into getting her a new hospital bed, a chair for her room and a commode. She should be staying at the hospice until everything is in place here. Then our lives should be slightly easier and Mum should be comfier. Finger crossed. I'll be going with Mum in the ambulance to the hospice. Will update when I get home and we know more.

Linsey xxx

Hi Lindsey

Hope that your Mum is now more settled and that the hospice is managing her pain relief and medication which will definitely help keep her more comfortable.  It will be very helpful to be able to get the home more mobility friendly for you both by the time she returns.  Take care, Jules x

Hi Jules.

It hurts to have to tell you that Mum has gotten worse. On Sunday she was very confused and agitated. I sat with her for four hours and she kept trying to get up to go to the toilet, even though she had a cathetar. On Monday morning, my Auntie came round and told me that she was getting worse and that she had been advised to get the family together to see her because she won't be with us much longer. She was unconscious all day yesterday. My Auntie phoned this morning to say she is still getting worse. I was planning to go see her today but Auntie said I don't have to and she doesn't think I'd be able to cope if I went. My Gran, who is in hospital recovering from a knee replacement, got out yesterday to see her. She's not being allowed out again, so I'm going to visit her today instead. I'll be honest, I'm really struggling with all this. Me and Mum are really close. I also have a lot of things to sort out. I will keep the house as long as I can. The mortgage will be paid off, I just need to worry about bills.

Linsey xxx

So sorry to read your latest update Lindsey and this will be a difficult and emotional time for   you and all the family. I am sure your gran will appreciate you popping into to see her too and you can help each other.  It is always good to  have close family near by and hope you can chat freely with them about everything.  The forum is always open if you need to offload anytime.  In the meantime take good care of yourself and remember your Mum is in safe hands at the hospice.  Not sure how old you are but you are doing so well to cope just now and when my own Dad was in a hospice they supported all the family as well as their patient. If you do not wish to visit your Mum you can always give them a ring and also stay in touch with your Auntie.

Jules x