Update and new worrying symptoms....

Hi Chris. So sorry to read what you are going through. It is such a tough journey. My husband had a much shorter journey, just three months from diagnosis to his passing on 29 December. I looked after him with help from my two adult children and carers for three months. Thankfully we had registered with our local hospice soon after the initial devastating diagnosis. We as a family desperately wanted to keep him at home but even with a temporary bedroom downstairs and multiple pieces of equipment, it just became impossible. By the time he transferred to the hospice on 19 December he had become doubly incontinent. My poor, proud husband really did have a horrid journey but his last ten days were spent in the most beautiful place, attended by the most caring and kind people. It helped us as a family to step back from his care and just spend precious time just sitting with him.  I miss him so much but I am so thankful that his suffering is over. I hope and pray that things are as peaceful as possible for you all, my thoughts are with you. 

Thanks Evajean. The hospice team are being great and calling every day to check on us and we know she can have a bed if she needs it anytime.

Your point about being able to step back from carer role and be a wife when he went to hospice is a good one. Our hospice contact said to me don't forget to be a husband as well as a carer. I know what she means but the reality is that you can't do both. Partly because I'm so busy with the caring tasks but also because if I took the time to try and process the emotional side of things I'd just break down and I can't do that right now. 

Physically things are getting really tough. Due to 18 months of steroid induced overeating she is a fair bit heavier than me now and has almost no strength in her legs and arms. So it may not be long before I have to just let them take over.

Thanks for responding and still being part of this group.

Hi Chris,

So sad to read your update and how hard it is getting for both of you. I'm sure it doesn't feel like it but it really sounds like you are amazing and doing everything you can for your wife. It is such an impossible situation and it really hit home with me your comment that you can't be both husband and carer. It's so heartbreaking to have the person you love become so dependent on you for their care, you wouldn't have it any other way but you have to put on the carer's armour to be able to get through the day without breaking into pieces. Remembering her beautiful smile is both essential and unbearable.

Its not much comfort when you feel so alone, but know that you are in my thoughts and I'm wishing you both the very best.

So sorry to read your updates. I don't have anything else to add as everyone else has pretty much said it all. We had hospice team involved for about 10 weeks and they were honestly angels without the wings. It was decided that they weren't the "appropriate" care team for now and mum was transferred to a care home and I miss them so much. Just having someone at the end of the phone and having that time to be children rather than carers was invaluable. 

Remember to try and take some time for you. This is an awful and draining journey. Thinking of you all x

I'm sending so much love and thinking of you all. I got goosebumps when I just caught up on your posting.

So important that you mentioned about the complexity of Husband and Carer and the inability to do both- my Mum has been caring for my Dad and what you've written resonates with the conversations I have had with her. 

It sounds like you couldn't be doing any more than what you are doing. I really truly hope you are okay and know that we are all here to listen 

HI all,

Quick update from me on things our end. In my last post I mentioned my wife now being at wheelchair stage, well that stage only lasted about a week. She was starting to have seizures every time we transferred her from wheelchair or commode. So I decided with the hospice outreach team to transfer to full bed care. 

This has really helped reduce the seizures as has upping the dex and the Keppra. Now when I have to do any personal care that involves having to flatten the hospital bed I give her some diazepam to mildly sedate her before we try to move her. It's not ideal but then none of this is ideal. 

She's sleeping about 22 hours a day and now eating very little despite the high dex dose. Though today she did request a mince pie with baked beans! Thankfully we had some clotted cream so I used that rather than the beans.

Despite her body being so weak she's still surprisingly able to hold a conversation. Though her speech is starting to slur and she sometimes can't find the word she needs.

Today they transferred her to an Air Flow mattress to help avoid skin issues. Only problem is that the electronic pump buzzes quite a lot. It doesn't keep her awake but it's going to annoy the heck out of me (I'm sleeping on the sofa bed in the corner of her room). 

So that's where we are, the decline over the last 6 weeks has been rapid but this last week has probably been the most stable since the start of it.

Hope you're all doing OK,

Chris 

So sorry to hear that things have declined so rapidly.   it an unbearable situation, you are doing amazingly well.  Sending so much love and strength for you xx

Sorry to hear things have declined so rapidly, it sounds as if you are doing amazingly well. We are in a similar situation, mum is full time bed care, and has been for a while but still mentally able to hold a lot of conversations. 

Completely sympathise with the buzzing of the airflow, you do get used to it after a time. Worse is when it malfunctions for any reason and starts bleeping out of nowhere, it used to make us all jump and the mute button became our best friend.

Sending love and thoughts x

So sorry Chris - I can only imagine how hard this must be for you. You are doing such a wonderful and courageous job. Sending you love and a cwtch

Mince pie & baked beans made me laugh, so wholesome. Sending love and support. I hope you're doing as best as you can.