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Chrissy
7th December 2012, 22:49
Hi All

Just going to have a little moan..feel free to ignore me but I think I feel a little better after posting on here.

We have had major changes this week, poor Bob, his legs won't hold him any more so from last Sunday he hasn't been able to go to bed, he is sleeping or trying to in Riser/Recliner chair. His chin is now permanently on his chest so speech and breathing are becoming very difficult. He now has to 'go' to the toilet in a comode in the kitchen, but from Sunday to today didn't. He has now managed it but says Christmas is off he does not want guests (my parents and 2 adult children) here if he has to use the kitchen as a loo.
Our house has been full this week of people, all trying to help but nevertheless it's invasive. We can't have a stairlift because of transfers and the wait for adaptation is 3 months.
I went out shopping for a birthday present and thought I'd get his Christmas card. Apologies to anyone who was embarrassed by the lady in Redruth Tesco card isle sobbing, that was me. funny how something silly like buying a card did that to me, it was trying to choose lovely words and Christmas songs were playing.

Miserable sod aren't I. sorry for the rant and I know you are all going through similar or worse things hey ho that's life with MND I suppose.

Will try and be more cheery next time, thanks for 'listening'

Chrissy

Kerry's girl
7th December 2012, 23:08
Hi Chrissy,

I am new to this forum. Have just spent ages typing out my introduction, only for my laptop to crash on me! Haven't got the will to do it all again!

If it is any consolation, I was in the same boat 12 months ago when I was choosing what I knew would be my last card to my Dad. He had Bulbar Palsy. Funnily enough, he lived in Penzance, my hometown, your neck of the woods! He clued up with a commode in the living room and he also slept in a semi upright position. I can't offer you any pearls of wisdom, as much as I wish I could. Each day chucks out something different on the emotional journey. I have read your posts and think that both you and Bob are such positive people. It sucks, what he is going through and being a witness is probably as bad. Maybe Bob will feel differently in a day or two? It's a cruel disease, for sure.

Now, buck up you miserable sod! I shouldn't take chances being a newbie but couldn't resist!

All the very best to you

Annelise xx

Gwen
7th December 2012, 23:29
Hi Chrissy

So sorry to hear about Bob. Wondered if your Occupational Therapist could get him a hospital bed which can be fully adjusted, also a "wave" mattress which would prevent him from getting pressure sores. The physiotherapist should be able to get him a support for his neck and head. I take it that your bathroom is upstairs. If he is sleeping downstairs, the Occupational Therapist could get him a Glide Commode so that he could "go" in the room he sleeps in. All of this equipment should be in stock and you should not have to wait a long time for it. I hope this helps.
I know how you feel about getting upset in public. I am frequently having to bite my lips - the slightest thing will set me off - even a kind word from a shopkeeper. Christmas seems insane to me, with my husband so ill. I've told the family I won't be sending Christmas cards this year and they say they understand. I've bought some presents and will see if I can get some help to wrap them. If not, they probably won't get wrapped. I am completely exhausted emotionally and physically. Like you, I am trying to be brave: you have a right to be miserable. I completely agree.
Some good advice I've had was to keep one day a week for yourselves and don't allow any visits from professionals on that day. We've found that mornings are not the best time for us, so we also try to restrict any visitors to the afternoons. Also, if you have a list of additional things that need to be done, try to limit yourself to doing just one of them per day, otherwise you might wear yourself out.
It sounds as though Bob could be entitled to Continuing Health Care Funding. For this, he would need to be assessed by an NHS professional who knows him well. Our Community Matron did this for my husband.
Don't try and be more cheery, just be yourself. This disease is hell. You will get good support from this Forum. Love, Gwen

roy
7th December 2012, 23:52
Hi Chrissy,
sorry about the other day when I said your day would get better.I always feel for carers they have the toughest time.For me being incapacitated is bad enough.For my wife works part time,sees me fading away,me being demanding,me not being able to help,looking after our daughter ect,ect,ect.No wonder you get upset Chrissy, I would, anyone would with a big heart like yours.I have a daily mission to be as strong as possible dont always suceed,but the times which are better when we can still laugh are so intense.My wife has taken me to three hostpital oppointments this week and some more next week,Gwen is right make sure if you havnt already get all the palative equipment,most of the aids that I need are delivered very quickly.

wishing you a better day.

Roy.

Graham
8th December 2012, 00:33
Hi Chrissy, Gwen,

A bad week for sure. Let the whole world know, they need to know. Gwen's advice is good. Let MND Connect know. Be strong girl, you have done a bad week, tomorrow is another day!

Love Graham

caz
8th December 2012, 13:35
your thread brought tears to my eyes.we are in exactly same position knowing it will probably be our last christmas as a family.my hubby also robert is struggling.wont wear his collar for transfersand wears his mask with his nippy machine more and more.it is agodsend get palliative care to get you fixed up.downstairs in hospital bed using commode in dining room legs very weak.he has already lost use of arms months ag
o.ask for chc we now have it four times a day and the girls are fantastic.w e too are waiting on adaptations and have now got mp and local councillor on our side .he is only fifty and diagnosed in march this year.today writing cards and wrapping pressies and going to make it a good family christmas.if you ever want to send me a pm feel free as as carers it is hard to tell friends and family exactly how we feel.much love and a huge hug .caroline

Chrissy
8th December 2012, 22:29
Hello All

Another crappy day (Robert will understand) but smiling now, I am cheered by your responses and certainly don't feel alone in my plight.
Thank you Graham I think you're right about letting the world know, although pityfully it's not helping you much at the moment. Good luck with your continuing fight.
Annelise thanks you also, sorry about your Dad pity you didn't have the benefit of this wonderful 'chat show' while he was alive, must chat more about our close proximity. And haha, I have bucked up now.
Roy no apology neccessary, bless you, I know you were trying to help me feel better and it did.
Gwen thank you, we have a community nurse coming next week, will bombard her with questions, good luck with Christmas no-one will mind if it isn't quite up to scratch, coming to believe that now.
Caz so sorry I made you cry, we sound to be in a similar situation, haven't got palliative care , this b disease has hit with a bang so we haven't had time to think about what we need before it's actually too late.

We will get there I'm assured and with friends like you I will learn to cope

Thanks to all for being there

Love Chrissy

Gloria
9th December 2012, 00:13
I know exactly what you are going through and my best wishes and love goes out to all carers it is tough. Hubby was diagnosed in May this year and now he cannot speak he has to spell out each word on a board and he can barely walk, his hands are useless I have to feed him and see to all his needs. At the moment he is in our local hospice they are trying to sort out his pain management his left side Is very painful. We are waiting for a bed for the lounge downstairs and a hoist, this will now become our bedroom, however we too have not got a downstairs loo and he has to use a commode. We are on the council's urgent list for a through floor lift and level access shower, we are currently number 42 we may get to the top in about 10 months time, what's the point we need it now, so we have decided to live downstairs.
We are waiting for an electric wheelchair and will have to change our vehicle to one with a ramp, I don't about you but all car stuff was dealt with by hubby and it is a learning curve for me.
I feel very lonely even though there are loads of people in and out of our house whether professional,family or friends, everyone says 'if you need anything just ask', but I don't want to I want everything to be as it was at the beginning of the year, I feel as though I am going mad. The house has had to be changed around to accommodate the bed and wheelchair (when it arrives!) I feel like a stranger in my own home.
We are now getting help from all quarters don't say you can cope otherwise you will be bypassed, accept everything even if you don't think you need it, they might not offer again.
So sorry for my rant but I do know what it is like and like Gwen any kind word usually sets me off! Can't stop blubbing when do you stop - probably never.
Love to everyone x

magic
9th December 2012, 06:31
Gloria, you are in a very similar place to Gwen. So sorry it is so tough for you. We are a year after diagnosis and, although tragic, not as quick a rate of deterioration. I have tried to accept all offers of help but it can be difficult to find a need soon after the offer. I will follow your advice and tell them that I cannot cope. Do hope the pain is under control and you are both more settled for Christmas. Do you think you qualify for continuing health care?
Magic

Chrissie
9th December 2012, 17:43
Magic, what exactly do you mean by "continuing health care" - still relatively new to all this and I don't understand.

Chrissy, Caz, Gwen and Gloria - we all seem to be in the same position, and I know what you mean about accepting offers of help, or rather not in my case as I keep thinking I will need even more help later and I don't want to "wear out my welcome" with friends before I really need them. And, of course, Christmas is still approaching!

We checked Terry's weight today and found he has lost another two pounds this week. He says he doesn't fancy eating because his mouth feels "slimey" all the time, so he forces himself to eat a little while he still can. Has anyone else had this problem? We need to up his fluid intake via his RIG and hope that will help.

magic
9th December 2012, 20:36
Chrissie, if you google continuing health care you will get a definition. Basically, as I understand it, you have to meet several health criteria and then you qualify for all the care you need. This is because it is funded by health service. It is not easy to get but your circumstances must surlely be near to it. Must e some information on MND site and really think you should talk to MNDConnect about this.

Magic

Chrissy
9th December 2012, 21:11
Hi Magic

Thanks for that like the other Chrissie I didn't know what it was and how to come by it, but still very new to us. Meeting with our local MNDA lady this week , will talk to her about it.

Chrissy

Kerry's girl
9th December 2012, 23:23
Hi Chrissie

Thank you for taking my first message in good part. After I posted it I re-read it and could've kicked myself as I intended it to be jovial but a bad day is a bad day and I was really concerned that you might have thought I was dumbing down your thread. I grew up in Pz but no longer live in Cornwall. During Dad's illness, I travelled up and down from Wiltshire roughly once a month. Each visit I saw a drastic change in him. He showed the first obvious signs of something not being right in Feb 2011, was diagnosed with MND in August and the progress of the disease was alarmingly rapid. I regularly visited this forum but I never had the balls to sign up. I don't why. The support on this forum is second to none. He lost over 8st in weight, Treliske had 3 attempts at fitting a PEG but failed each time. They had no idea, it seemed, as to exactly what MND is and they were never prepared for him. I have read Graham's thread with disgust as it resonates a lot of what happened to Dad. Luckily for Dad, he never stayed in for anymore than a few days at a time.

So, he passed away in January of this year. He was frightened that he would die choking because he lost the ability to swallow but mercifully, he died peacefully in his sleep in his own home. I don't think I have got my head around it yet. I still can't believe how a man who was in good health could be stuck down like this. With Christmas coming, it's as though another wave of grief has hit me. I have gone ahead and bought him a present, a nice bottle of rum! I still can't delete his number off my phone. I think of him every day, I might be getting the kids their tea and find myself in tears in the kitchen. It's been a really hard journey and I am sure it will get easier as time goes on but I do understand the feelings you describe.

Kind regards

Annelise

Chrissy
10th December 2012, 16:54
Dear Annelise

I really feel for you, you haven't finished grieving obviously, I do hope you have the support of a loving family to get you through this first Christmas without your dear Dad. I am desperate to see my Dad who will be 85 next birthday, we were due to see them in Leeds my hometown in September but although not diagnosed Bob was already too ill to make the journey, I nearly went on my own, luckily I changed my mind because he fell on the stairs the very day I would have been travelling. All being well they are coming this Christmas, haven't seen them for 2 years so there will be tears.
You really mustn't worry about your comment, it made me laugh, sometimes we need it to be told like it is and I was being a miserable sod as I have been all weekend (but that's another story)
Give yourself some time to feel sad there is not time limit on grieving, I still cry every first Carol I hear as my Nan died 22nd Dec my Mum's birthday that was 22 years ago. It's another way of feeling sorry for ourselves because you wouldn't have wanted to keep Dad alive if he was suffering but it still is the only way we cope.

Take great care

Love Chrissy

Rory
24th December 2012, 20:50
Hi Chrissy

Mad Rory again !

Do what you have to do to make your Xmas with Bob a special one - do what is right for both of you ?
A word of warning - watch out for poor Bob when you are carving the turkey in the kitchen - we all like giblet gravy but that is going too far !

I am much the same position as Bob. With Bulbar foot and mouth membership - the family is pleased that I can't tell my jokes now that the voice has gone ! Just getting over a two week chest infection - where does all this gunge come from - so still feeling a bit weak but the various antibiotics appear to be working - at last ! Sorry for the little moan - but it is good to get it off your chest - so to speak !

Late decision to travel to brother's

I am sitting at my brothers house just getting settled

I am currently on the ventilator
I am feeding through the PEG
The suction pump is at the ready for the gunge
I have the nasal spray at hand to keep the nose clear
The mouth gell is at the ready if the ventilator dries my mouth out
Tissues at the ready for dribbling
Wipes to clean the suction pump
A skip load of medicines in the kitchen ready to administered by the lovely Irene
With all these wires and extension leads and gadgets around me, I hope there is not a power cut otherwise I could miss Boxing Day!

The main thing is I have the remote control and I feel in control without having to get out the chair !

I think several posts have covered the issue that the illness can be worse for the carer / loved ones - you all do a marvellous job in keeping our spirits up (and down our throats) . Bob is very lucky, like me , to have such super support . Believe me I will never give up and hope to be laughing to the end !

My new years resolution is not to get MND again !

Best wishes to you all and have a well earned quality day

Rory
X

roy
25th December 2012, 00:12
Hi Rory,

Raising my glass to you.you have a great one.

Roy

Chrissy
25th December 2012, 10:49
Hi Rory

As always you have cheered me up.

Bob in a similar place to you but we have managed to move him and all his paraphanalia around to give all the able bodies room to move around.
He is pleased he made it to today and has opened all his presents and is very very happy this morning so all is good so far.
The giblets are simmering away at this moment and can announce they belonged to the Turkey not Bob (lol)
Enjoy your Christmas as we intend to and thank you for your humour despite your problems

Love Chrissy

Rory
25th December 2012, 12:32
Hi Chrissy

So good to hear you and Bob are having a good day - and that Bobs giblets are safe !
I have only just got up after the best sleep I have had in over 15 days ! So here we go !
Back to the space station of gadgets !

Enjoy

Rory
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