Deterioration

So sorry Subulee. We are here for you whenever you need to just let it out. Please know that you're not alone. Have hospice support talked to you about what else you think he needs? I wonder if it might be worth a call with Macmillan just to see if they can offer advice (if you haven't already). The number is 0808 808 00 00 if you need it.

My wife has slept downstairs since diagnosis as she needs a bed she can raise to avoid headaches and be more comfortable. It also means she doesn't need to do the stairs so much. I miss her at night terribly and am not ashamed to say that I actually got my teddy bear down from the loft that I had when I was small just to have something to hold. 

Take care,

Chris

I am planning to rent a stair lift for Pete as that is what he has asked for. He wants us to be together as long as possible.

My teddy has been hugged so much and wiped up so many tears that he may need a bit of surgery himself.

Oh Subulee, I am so sorry. As Chris says, we're here for you. 

I have no words....

Sending you a huge virtual hug, love and light. 

Love n hugs

Wee Me xx

So tonight was the first time Pete could not manage the stairs. We are sleeping downstairs tonight. My dog thinks it is his lucky day as he can cuddle upto me at night for once.             We are getting a stairlift on Wednesday morning which will help but I  am currently lying here in the dark crying. I can see him going. He can't  start a conversation anymore although he can answer if I start asking questions., he is forgetting how to do simple things and needs prompting. 

Hey Sulubee...

I am so sorry.  I know the agony of this.  We went through a similar thing.

If you haven't done so, I think you should talk to the hospice about a few things:

• Getting a hospital bed on order.  They can take several days to arrive and it seems like your husband is losing mobility.  The season where Fi still had some mobility left was the season that was most risky for my back - you must do everything you can to look after your back.
• Getting a Continuing Healthcare Assessment so that you can get carers in to support you.  Even if it is only once a day initially (perhaps to help to get him up and shaved and washed and dressed) - that puts you on the books which means they can quickly ramp it if they need to.  And make sure you say what you need.  Initially I was offered someone to come in "at some point in the morning" which was useless to us since it would have stopped us doing anything at all (at the time we could still just about get out).  So they switched to a different provider who was able to give a one hour range.
• Getting an OT out to assess him.  A little equipment might be helpful to protect your back and preserve his mobility.

It sounds like you have thought about what would be involved with moving to single storey living.  We decided to move Fi downstairs to the lounge once she didn't have the mobility to use the stairs or the shower.  The lounge was pretty inconvenient for my daughters because it is the only way to get from upstairs into the downstairs of the house, but I am so glad that we did it, because it meant that she was right at the centre of the household for the last 6 weeks of her life, rather than being stuck upstairs out of the way in our bedroom.  It meant that everyone got to be with her and I rarely had to be further away than the next room.  I slept on a mattress on the floor though i f I'd realised it would go on so long, I probably would have bought a folding bed from Argos.

I'm so glad you have a dog.  I don't know what I'd have done without Tommy.  He has a very small brain - but he sure knows how to make a person feel wanted.  Please try to get some time outside the situation to recharge your batteries from time to time.  Call in the reinforcements and get out for a dog walk.  

Big hug...

Pete

Hi.

We have had an OT assessment and they have been brillant. She is coming back this week to teach me a few safe techniques to transfer from chair to bed etc.and to use the equipment. 

The hospice has arranged carers from next week to come in and help get Pete up , washed and dressed which will be a massive help and I  have spoken about a bed on order. There is only Pete and myself here - we have always just been the two of us so we may move downstairs but the stairlift will help for a while.

Yes I agree that a dog really helps. Ours sits with Pete alot more these days and will be there as company for me when he passes. He makes us both laugh together even when Pete forgets things he remembers the dog.

Well today - late this afternoon Pete was unable to stand so I could not transfer him or change his pads. I only just got him onto his wheelchair. I called the hospice team. They said call the paramedics to move him. Paramedics arrived within 30 minutes and helped me change him and settle him on the sofa. Whilst they were in the house the CNS from the hospice arrived to assess him. We have a bed for downstairs arriving tomorrow.  We will try increasing his steroids which may help for a short time. Carers came in this evening and helped change him and will be back tomorrow.  Great service by all. He is very calm about it all. I am in pieces inside. It is too quick. I am not ready for this.

I know. I'm really sorry. It's absolutely brutal. You are doing amazingly. I'm glad the support is there for you. I'm glad you are able to call the hospice team for advice and get the help that you need. And I think you are wiser than I was. I carried on helping Fi move between bed and commode and chair longer than I should have. In the end she asked me to stop because I couldn't do it without hurting her.

We had a hoist for a while, but that requires two people to use it safely, so it was only really useful for the carers. 

If you need more care support then it should be there for you. If you need someone to stay the night even, so you can get a decent night's sleep, they can provide that under the terms of the continuing healthcare assessment. Make sure you keep asking for what you need. It would be costing the NHS a fortune to look after your husband if you weren't doing it, so it is in everyone's interest to make sure you are okay.

Have you got support from family and friends? Someone to come and be with him for an hour or so, so you can get some time out of the pressure cooker? Carers can do that too, with prior arrangement, if no family are around.

I wish I could give you a hug. You're going to need everything you've got to get through this, but you will get through it. And your strength will be knowing that you are doing your best throughout for someone you love.

Much love to you...

Pete

Hi Sulubee,  sending you my thoughts and best wishes, hugs to you. This stage is just so accelerated.  The final sprint of this disease is so fast and awful. Good you have more teams alerted and helping you. You're doing a fantastic job. We're thinking of you. Xxxx

Just wanted to say thanks for sharing this update with us. For those of us a bit earlier in the journey it's really valuable being able to understand what to expect. It sounds like you've got a good amount of support there now which is great to hear. 

We're all thinking of you

Chris