Alert call buzzer

[denise]

Thank you everyone for your support and kind words. Social worker is calling homes today to find the right care home to suit Stephen's needs. I gather they have to be able to deal with his peg even though it's only being flushed and cleaned. Mnd has offered to give training to the home. I didn't get any training!! So I wait to hear what's going to happen.

The molift looks good but Stephen's legs are unpredictable. They are strong and capable of walking but his brain is unable to deal with walking. I don't understand it myself. He has no idea of danger either.

Hes asleep at the moment so I have peace and quiet while I have breakfast.

Thanks again your words mean so much. 😘

[TinyLady]

denise - I really feel for you. Whilst this is great news, some support at last, I can only imagine those feelings of guilt and if you could/ should have done more so you didn't need respite. The truth is you have battled heroically. I could never have coped like you have. You need that respite and it will be good for both of you.

Those guilt feelings? They are just that, feelings. Not facts. You should be proud of yourself because I certainly think you are amazing.

BTW - I spent a month in the hospice in February and although very reluctant, I was very well cared for and the food was great xx

[MMG]

I'm struggling with getting him out of his raiser chair and the toilet his arms cant help me lift him.

😐

We had this issue all of a sudden when I broke my leg last August and just couldn't help lift him anymore. (another crisis) I didnt know what to do so spoke to my lovely OT who issued an emergency piece of equipment- a wonderful Molift. No hands required by patient.

It really saves your back - it didn't go back to them until he sadly progressed to a hoist. It came on two holidays with us and enabled safe stand up showers too and can push around the house.



In terms of respite, I havent taken up the offer if respite, although felt I was getting to the point where I needed it, when his carer hours were reviewed after a tearful crisis call to social services before Christmas. We were getting 14 half hour calls per week which actually caused me more work rather than providing help. The final straw was when one of the carers pulled a drawer front of one of my kitchen cupboards, didn't tell me just left it on the kitchen floor. Under normal circumstances no biggy, but it tipped me over the edge..

Anyway, I asked to speak to our social worker to be told we haven't got one!!!!!! so spoke to duty social worker who agreed that we needed 42 hours per week. This has made such a huge difference, we went down direct payment route so have recruited 2 personal assistants for Mon to Fri. This means that I can become a "wife" again instead of carer. Weekends still not covered, but not so daunting as 24/7. I don't feel that I need respite now, although I do use 5 hours per week so that i can walk the dogs for an hour a day.

I have also been able to go back to work part time which brings a bit more normality into our lives.

Denise try and get some support from social services after your respite so that you can have a quality of life too. My husband fortunately accepted the help offered, I wouldn't have coped otherwise. It is hard, physically and mentally. I am still worn out, as I am still on duty 24/7 but the carers really do help us both.

[Claireflo]

denise it's such a difficult situation for you both but you need to look after yourself too.

Hopefully the respite will help Stephen to recieve support that he needs while they assess what additional support can be put in place and give you a break and to be able to spend some time together rather than as the sole carer.

You clearly do so much to support and care for Stephen but you plysically can't do it all. Hope some additional support can be put in place to help, in the meantime take care of you.

[Bowler]

denise Shelly is spot on. As Del Boy would say “you know it makes sense”

[shelly21]

denise you are so in need of a break. I know guilt must play a part but you physically, cannot lift Stephen. You haven't failed you've realised its now dangerous for both of you.

Just let go and rest. Hopefully then care will be decided for you. I hope you realise how utterly amazing you have been. I was explaining you to my partner and how utterly exhausted you must be. Xxx

[Ellie]

Looking at 2 week's respite as I'm really struggling to look after Stephen ... I feel guilty about respite

Denise, do not feel guilty about Stephen going for respite - it should be mandatory 😏

I don't have the added complication of FTD and I know that my partner would have most likely walked out had he not had my annual respite which allowed him to reboot his brain, emotions and body.

I am fully aware that I am 'lucky' so, if Stephen is offered respite, take it, you need to reboot yourself.

Love you xxxx

[Doggymama]

Oh Denise I am so sorry, it is so hard! I can relate to what you are saying. At times it is just so overwhelming. The 2 week respite will do you so much good and Stephen too. Don't feel guilty, you also need to look after yourself in order to care for him. Sending you much love and a hug xx

[denise]

Met our new OT yesterday and our lovely physio and today new social worker. New social worker because for some reason our referral to social services had been cancelled. Dont ask me, nothing surprises me.

Looking at 2 week's respite as I'm really struggling to look after Stephen. He won't take in that I don't want him going down 4 stairs on his own. Cant use a stair gate so I'm thinking electric fence 🤣! I left him watching TV and next thing I know hes gone down the stairs and hes in the kitchen with me. I'm struggling with getting him out of his raiser chair and the toilet his arms cant help me lift him. Thing is if this was always the case I'd know he's safe in his chair but he seems to do it on his own and that's what really worries me. Its like looking after a big toddler.

I keep bursting into tears and shaking. I feel guilty about respite but I know we both need this. I certainly need a break. I cant do all this paper work and look after him.

😐

[Doggymama]

We have had some good news today, our OT is ordering my husband a riser recliner chair and a personal alarm with a fall sensor that will alert my phone if he presses the buzzer or falls. Will be a relief that I can now walk our dog without worrying so much in case he falls when I am out. xx

[TinyLady]

denise - thank goodness. I hope they have some solutions to help you in the future.

I know what you mean about the cats! Mine are not impressed by the builders x

[Claireflo]

Sorry to hear about the various falls. I hope you get the support you need tomorrow Denise.

[Heather R]

👍🤞🤞 xx

[denise]

Physio and ot coming tomorrow and possibly social worker. It will be crowded in this flat. My cats will be under the floor boards. 🙃

[TinyLady]

denise - I hope something is happening to get things sorted for you both. I'm feeling particularly angry today that care and support is not consistent for everyone.