Well the day has come when I have to ask for help.
Monday, 30 November 2015
Tuesday, 10 November 2015
Foam lollipops and medicine
Lots of lollipops
A constant supply of pink foam lollipops and medicine has tto be ordered and kept up.
A constant supply of pink foam lollipops and medicine has tto be ordered and kept up.
Friday, 30 October 2015
Musical chairs
Aha - what fun. Twice a day let's move all the furniture around.
Yvonne finds the chair in the conservatory to be the most comfortable as it has a high back for shoulder and neck support as well as comfortable cushions and the arm rests, ( these have towels over them to make them softer!)
We have moved one of these to the bedroom which she uses before and after sleeping and at 3am, when she wakes to clear her mouth.
The other one of the pair is in the conservatory where she sits in the late morning and lunchtime.
After lunch, she likes to move into the lounge.
This means transferring her and her breathing machine to the wheelchair for the journey, then...
Open the big conservatory doors and move ' Rosie' and a dinning chair out of the way. Carry yvonne's chair through to the lounge and sit her in it, then....
The rest of the paraphernalia has to be taken too!
Footrest, fan, drink, cloths, ipad etc.
We even have a couple of bricks in the lounge to ' jack up' the front legs of the chair so she can see the TV easier, ( now that her neck is too weak to support her head upright).
Of coursem in the morning, this operation has to be reversed for her to sit in the conservatory! !!
Yvonne finds the chair in the conservatory to be the most comfortable as it has a high back for shoulder and neck support as well as comfortable cushions and the arm rests, ( these have towels over them to make them softer!)
We have moved one of these to the bedroom which she uses before and after sleeping and at 3am, when she wakes to clear her mouth.
The other one of the pair is in the conservatory where she sits in the late morning and lunchtime.
After lunch, she likes to move into the lounge.
This means transferring her and her breathing machine to the wheelchair for the journey, then...
Open the big conservatory doors and move ' Rosie' and a dinning chair out of the way. Carry yvonne's chair through to the lounge and sit her in it, then....
The rest of the paraphernalia has to be taken too!
Footrest, fan, drink, cloths, ipad etc.
We even have a couple of bricks in the lounge to ' jack up' the front legs of the chair so she can see the TV easier, ( now that her neck is too weak to support her head upright).
Of coursem in the morning, this operation has to be reversed for her to sit in the conservatory! !!
Thursday, 29 October 2015
A quick nip to the chemist
Just going to the chemist for yvonne's prescription.
As I can't leave her alone, she has to come with me. At least we can stop on the yellow lines outside the chemist using her blue badge!
Not only do I have to put my shoes and coat on, I have to get Yvonne ready. Shoes, jumper, get into wheelchair, go out to car, transfer into front seat drive the car, drive forward to get the wheelchair into the back, drive to the chemist (1mile into town) . Go in and collect prescription.
The process is then repeated in reverse order to get home.
This whole excursion could take an hour or more.
It could be a 15min trip on my bike!
As I can't leave her alone, she has to come with me. At least we can stop on the yellow lines outside the chemist using her blue badge!
Not only do I have to put my shoes and coat on, I have to get Yvonne ready. Shoes, jumper, get into wheelchair, go out to car, transfer into front seat drive the car, drive forward to get the wheelchair into the back, drive to the chemist (1mile into town) . Go in and collect prescription.
The process is then repeated in reverse order to get home.
This whole excursion could take an hour or more.
It could be a 15min trip on my bike!
Life on a breathing machine
As for Yvonnes condition has deteriorated and her breathing is very weak, she is now using the 'nippy ' non-invasive breathing machine most of the time during the day as well as all night.
The face mask, covering nose and mouth, is held in place with a neoprene strap. Her mouth secretions continue but she cannot clear them. Every few hours it becomes unbearable and I have to take it off so she can clear. The mask has to be washed and dried. Having two masks is necessary so 1 can be drying. A damp mask doesn't seal correctly!
Yvonne is now unable to fit or remove the mask herself.
Also having a battery backup is important so that she's not tied to a power outlet. Transferring between chairs, bed and toilet, whilst connected (even on battery ) is another challenge, the pipe between mask and machine can get twisted, could pull on the mask and tangle both Yvonne and myself.
Tuesday, 20 October 2015
And still it goes on!
Still it goes on. Each day I wonder how I'm going to cope!
Yvonnes suffering continues day after day. I'm trying but finding it increasingly difficult to care for her with the same level of sympathy.
I'm continuously frustrated that I can't do anything for me, and little tasks around the house don't get done properly, as I'm continuously aware that I can't leave her. The boys both come and go, only seem to come in when they need something and it suits them. Can't relieve me and Yvonne doesn't want them to.
She's sleeping for a bit now, on the ventilator. As soon as she wakes, she'll need me to take off her mask, and help her sort out her uncomfortable mouth. The build-up inside is horrible.
Always seem to be moving furniture around, to make room to get the wheelchair through. Her 1 comfy chair gets moved between the conservatory and the lounge.
The hospice have offered for a week's respite, but Yvonne doesn't want to go and stay there without me. (she relies on and only feels ok when I'm with her). It would be more difficult for me too if we went there, and then there's the coming back - easier to continue with our routine here.
From early on, I'd convinced myself that her end of life would come quite quickly, her breathing would cease before her mobility would get too limited.
Yvonnes suffering continues day after day. I'm trying but finding it increasingly difficult to care for her with the same level of sympathy.
I'm continuously frustrated that I can't do anything for me, and little tasks around the house don't get done properly, as I'm continuously aware that I can't leave her. The boys both come and go, only seem to come in when they need something and it suits them. Can't relieve me and Yvonne doesn't want them to.
She's sleeping for a bit now, on the ventilator. As soon as she wakes, she'll need me to take off her mask, and help her sort out her uncomfortable mouth. The build-up inside is horrible.
Always seem to be moving furniture around, to make room to get the wheelchair through. Her 1 comfy chair gets moved between the conservatory and the lounge.
The hospice have offered for a week's respite, but Yvonne doesn't want to go and stay there without me. (she relies on and only feels ok when I'm with her). It would be more difficult for me too if we went there, and then there's the coming back - easier to continue with our routine here.
From early on, I'd convinced myself that her end of life would come quite quickly, her breathing would cease before her mobility would get too limited.
Sunday, 4 October 2015
Difficult life
Oh, it's so difficult. MND has robbed us of the life we had!
I'm frustrated because I can't get to do anything for me, just about manage to do the household chores, in between bouts of doing things for you.
I know how frustrated you are, only able to sit and watch everything I do, wishing you could get up and help, (or take over).
I feel so guilty, especially with eating and drinking. The way she looks at me and 'says ' I want yours!
It makes me feel I don't want to eat/drink in front of her, but she wants me to be with her.
I'm frustrated because I can't get to do anything for me, just about manage to do the household chores, in between bouts of doing things for you.
I know how frustrated you are, only able to sit and watch everything I do, wishing you could get up and help, (or take over).
I feel so guilty, especially with eating and drinking. The way she looks at me and 'says ' I want yours!
It makes me feel I don't want to eat/drink in front of her, but she wants me to be with her.
Friday, 2 October 2015
'Me' time
There used to be time in our relationship and family life for me to have some 'me time'. To do things for 'me'.
I'm really missing this today!
After doing all the chores, I try to sit and have a coffee whilst I look to see who sent me that text an hour ago, or check my Facebook for friends posts (seems like I'm still part of life ). Oh no, now the demands of Yvonne start. She's been ok having a doze whilst I've been busy. Take to the toilet, wipe her mouth and get this and that. Now my coffees cold! !
If I should say anything or show any frustration , she gets upset and I have that to deal with too ..
All I wanted was 10 min 'Me time'.
Monday, 28 September 2015
Todays biggest thought,
I want to see the back of this illness and the suffering it's causing Yvonne. I want to be free to do the things I used to do; go to work, ride my bike visit family.
I know, however, that this will mean saying good bye to yvonne, my closest friend, my wife and life soul mate. I love her so much, but i want this nightmare to end.!
I know, however, that this will mean saying good bye to yvonne, my closest friend, my wife and life soul mate. I love her so much, but i want this nightmare to end.!
Sunday, 27 September 2015
And how it is now
As Yvonnee's condition deteriorated and she was not able to do things, I had to take over. I started by helping her so that she still had control,, but gradually, each little task was added to my list.
Everybody says, "look after yourself", but there's no time or opportunity for me. Yvonne now relies on me and only feels safe when I'm with her. I'm not happy to leave her unless I know she's okay.
Our life has now become a daily routine of getting up, washing Yvonne, taking her downstairs to her comfy chair in the conservatory. Four feeds using a bolus syringe, cleaningup, doing all the housework and cooking, washing Yvonne, then finally getting to bed at midnight.
Even though a lot of the things are quite small on their own, added together and repeated day after day they came be quite tiring.
Every day I wonder how will I be able to manage, but somehow each new task or challenge is taken on and achieved.
Tuesday, 22 September 2015
In the beginning
How it started for us..
After suffering problems in the back of her throat and nasal passages, Yvonne's voice started sounding a bit slurred. After the basic tests and nasal douche, she was referred to ENT then to Neurological teams.
In September 2013, the neuro consultant diagnosed MND, and in particular ALS type.
MND is Motor Neuron Disease, and ALS (another name for the worst variant -Amyotrophic Lateral Sclerosis ) - You remember the 'ice bucket challenge' in 2014, raised about 7 million for this.
Life expectancy 3 -4 yrs.
This was our bombshell moment. We spent the next few weeks and months in shock, and disbelief - our world turned upside down!
We kept hoping there was a mistake, that we would wake up from this nightmare, but as time went on and Yvonne's symptoms gradually got worse, we began to accept it.
Our life then turned to living every day for today. Trying to make the most of the short time we have left together . We booked our 25th anniversary holiday and had it 5 years early. We went to Malaysia with Yvonne's best friend and husband, who were married the same year.
More holidays followed, Brussels with our two boys, Florida and Grand Canaria. Building memories!!
Yvonne's condition continued to deterioate, losing the ability to talk and swallow. A feeding tube (PEG) was fitted and liquid food was necessary (nil by mouth, for a year now)
Communication was a mixture of writing on a write on - wipe off board, charades and other gestures, a speach app on an iPad and my guesswork and intuition.
Now that her condition has worsened, it is limiting her mobility too. An occasional use wheelchair has been replaced by a permanent version and a full support motorised variant. A new car (motability one with ramps and a winch) has become necessary. A stairlift was installed so that we could still use the bedroom. Even breathing has become a struggle, chest muscles are weakening. A non-invasive ventilator (a full face mask) used at night at first, and now also when needed during the day, helps reduce the strain on the muscles. A hospital bed helps with the sleeping, and now anti-anxiety medication helps Yvonne to relax.
After suffering problems in the back of her throat and nasal passages, Yvonne's voice started sounding a bit slurred. After the basic tests and nasal douche, she was referred to ENT then to Neurological teams.
In September 2013, the neuro consultant diagnosed MND, and in particular ALS type.
MND is Motor Neuron Disease, and ALS (another name for the worst variant -Amyotrophic Lateral Sclerosis ) - You remember the 'ice bucket challenge' in 2014, raised about 7 million for this.
Life expectancy 3 -4 yrs.
This was our bombshell moment. We spent the next few weeks and months in shock, and disbelief - our world turned upside down!
We kept hoping there was a mistake, that we would wake up from this nightmare, but as time went on and Yvonne's symptoms gradually got worse, we began to accept it.
Our life then turned to living every day for today. Trying to make the most of the short time we have left together . We booked our 25th anniversary holiday and had it 5 years early. We went to Malaysia with Yvonne's best friend and husband, who were married the same year.
More holidays followed, Brussels with our two boys, Florida and Grand Canaria. Building memories!!
Yvonne's condition continued to deterioate, losing the ability to talk and swallow. A feeding tube (PEG) was fitted and liquid food was necessary (nil by mouth, for a year now)
Communication was a mixture of writing on a write on - wipe off board, charades and other gestures, a speach app on an iPad and my guesswork and intuition.
Now that her condition has worsened, it is limiting her mobility too. An occasional use wheelchair has been replaced by a permanent version and a full support motorised variant. A new car (motability one with ramps and a winch) has become necessary. A stairlift was installed so that we could still use the bedroom. Even breathing has become a struggle, chest muscles are weakening. A non-invasive ventilator (a full face mask) used at night at first, and now also when needed during the day, helps reduce the strain on the muscles. A hospital bed helps with the sleeping, and now anti-anxiety medication helps Yvonne to relax.
Why this blog?
Since my wife, Yvonne, suffered from this disease all the posts, articles and blogs I have read have been written by wifes whose husbands have MND.
Whilst most of the symptoms and difficulties are the same, they often occur in a different order. Timescales are also different. I have found that the combination of symptoms make dealing with the problems different.
Although I'm only starting this blog near to the end of our journey, I hope it proves useful to help you understand and maybe proves helpful.
I have found my readings helpful even though they don't necessarily match our situation, and writing my thoughts in this blog has helped me, even if nobody reads them.
Whilst most of the symptoms and difficulties are the same, they often occur in a different order. Timescales are also different. I have found that the combination of symptoms make dealing with the problems different.
Although I'm only starting this blog near to the end of our journey, I hope it proves useful to help you understand and maybe proves helpful.
I have found my readings helpful even though they don't necessarily match our situation, and writing my thoughts in this blog has helped me, even if nobody reads them.
Subscribe to:
Posts (Atom)