First Real Post

[Bowler]

Hello to all. My name is Phil and I am my wife’s full time and only carer.
Ann was diagnosed 5 years ago so she is what you call a slow burner. She is now at the stage of not being able to move any limbs or hold her head up for any length of time. Her swallow has almost gone so she survives on about 12 ounces of custard / yogurt per day. Her speech has gone but up until now she has been able to at least make some noise sufficient to wake me at night to alert me that she needs turning in bed. Now this has become so weak I no longer hear her which is causing Ann enormous stress. Has anyone got any ideas on how we can over come this. We have tried baby monitor but she is so faint that even that doesn’t wake me up.

[Barry52]

Hello Phil and welcome.

I’m sorry to hear about your wife and I can understand how she feels stressed about her inability to raise the alarm. There are personal alarm systems available but you generally need the strength to push a button. The other option may be an led sensor but that also requires movement.

You mention your wife’s diet so I assume she doesn’t have a feeding tube. Sorry I can’t come up with any other suggestions and I hope our members here will have ideas.

Barry

[Lynne K]

Hi Phil, I’m very sorry about your wife’s situation and the stress that it must cause you.

The amount that you say your wife eats is not enough to sustain her I’m afraid. If she doesn’t have a feeding tube have you considered high calorie drinks? I think that you could do with some professional advice. I don’t know if it’s too late for her to have a feeding tube.

About your wife being able to alert you. There may be some or other device that she could use with one of her working muscles. You really need to speak with your wife’s OT or Physio who could refer her to a service that has gadgets. A call to the MNDA helpline may be helpful too. Good luck. Lynne

[Bowler]

Thank you Barry and Lyn for your response.

Ann had an alarm for a couple of years but now she can only move her eyes.
we are linked in with ATC which is the NHS techy Arm and they say all alarms require some form of movement.
we have had great help from the SALT Team however Ann was clear from the start no feeding tube. We were mixing protein drinks in with custard but she stopped that a couple of months ago.
since the end of last year we have also been linked with the local hospice who I must say have / are superb. We’ve had consultant visits and conference calls. The hospice have offered some overnight nurse support via a local charitable organisation but it would only be on an adhoc basis which will not solve the problem because we would be in the same position the next night.

Ann has also been very clear via her respect form she does not want an intervention that will prolong her life.

I guess I’m just clutching at straws for what I feel is the last throw of the dice.

we have decided the way forward is for me to sleep next to her.

take care

[matthew55]

I just don't get people who don't get a feeding tube. Just expressing my opinion.

[Ellie]

Hi Phil.

You write with such tenderness and dignity, and with such respect for Ann.

I am so glad she is linked in with a hospice. Have you thought about applying for fast tracked CHC with the hospice's involvement? This might get Ann overnight care.

In case you don't know, there are pudding style products from Nutricia which would contain more calories and nutrition than yoghurt.

Take care now.

Love Ellie.

[Ellie]

Oh, I forgot to say - if Ann can turn her head on the pillow, a flat, large surfaced wireless doorbell might be a solution.

[Bowler]

Matthew not helpful...just expressing my opinion

[Ellie]

I just don't get people who don't get a feeding tube. Just expressing my opinion.

Equally, some people just don't get why others do get a feeding tube. No right way, no wrong way to deal with one's MND. (my opinion)

[Bowler]

Thank you Ellie. Sadly Ann can’t move her head only her eyes but even that is an effort.

we have tried various puddings but just to add in more problems Ann has an extremely sensitive tummy that does not react well to any kind of seasoning which all puds have in some form.

Regarding CHC this has been talked about however I have also been very clear that as long as I can manage it I will look after Ann. I promised this to Ann 46 years ago in our marriage vows and reiterated it the day we sat in a lay-by in total shock having just been given the final diagnosis.

so now I have had a word with myself about stopping moaning and get back to caring for the most precious person in my life.

thank you all for your kind support

[Deb]

Oh Phil, Your beautiful and well written words about Anne have moved me to tears.

You are privileged to share such deep love and I admire you for respecting Anne's decisions. You are quite entitled to a moan about the hand you have been dealt, however. Noone can be brave all the time.

I hope you are able to take care of yourself too.
Love Debbie x

[Bowler]

I am indeed privileged Debbie

take care

[Lynne K]

Phil, I second the words that Ellie wrote to you. You are a special and rare person that could have managed this far to care for Anne on your own. As Ellie stated that if you need to offload at any time 24/7 it won’t be long before one of us gets back to you. There are some night owls amongst us. Lynne

[Bowler]

Lynne, thank you for your kind words. I’m not doing anything that Ann wouldn’t have done for me if it were the other way round. It is getting tough now, not physically but watching someone that you have been with since we were both 15 slowly get locked away inside their own body is emotionally exhausting. I can only imagine the terror that Ann feels.