Newbie – Carer for wife

Tell us a bit about yourself here.
Hi
An introduction and a little history of how I came to find myself being a carer:
My name is Mal. I’m a 51 year old male and the main carer for my wife Lynne who is 52 years old (8 months older than me).
Back in the Autumn/Winter of 2009, Lynne who used to love gardening and spent many hours pottering around the garden, started to find that she was having difficulty rising from a kneeling position. At the time Lynne and I just put it down to “getting a bit older”. Sometime around January however when we were out shopping I noticed that her walking wasn’t normal, it appeared as though she was waddling from side to side. I mentioned this to her and suggested that she should make an appointment with our GP, which she did. She was subsequently referred to our local hospital.

During the spring and summer of 2010 there followed a succession of appointments, tests and referrals at various hospitals. During this period she also for no apparent reason, would on occasion fall over when going to/from our local shops and GP Surgery (5 minutes walk away at most). The first couple of times she fell, she didn’t think much of it and thought she may have tripped whilst not concentrating. She then started to find that after a fall she could not get herself back on her feet unaided. She had to ask passers by to assist her. This was naturally a great concern and worry for me, particularly at times when I was at work as she would often pop around to the local shops when I was at work for fresh bread, milk or magazines she likes to read. She also started to find that she could not raise her arms as high as she used to be able to, finding it difficult to get items out of the wall mounted cupboards in the kitchen.
By the summer of 2010 she was walking much slower and her occasional falls were becoming more frequent. She was also finding that she was quite often exhausted by the time she got to the shops and would have to rest for a few minutes before she could walk back home. I would often come home from work to be told that she had fallen during a trip to the shops. It was at this point that we agreed that she would not walk round to the local shops unless I was with her. I also purchased a walking stick for her, which she found to be helpful.
Around July time, after a couple of trips to the local shops/GP with her I discovered just how slow she was walking and how exhausted she got. On our last walk together to the local shops the walk there had been so exhausting for her that I left her sat on a bench, while I walked back home to get the car to take her home in.
During this period Lynne’s father passed away.

In September 2010 she was referred to John Radcliffe Hospital in Oxford, where she was finally diagnosed with Motor Neurone Disease (MND). We were told that there was no cure or treatment for this terminal illness and that all that could be done was to make life as comfortable as possible and monitor the deteriorating condition.

The following couple of months were a bit chaotic and it felt as though we were on a runaway train: Visits from various hospital and social services departments, DWP, etc. endless forms to read and fill in. Grab rails were fitted where Lynne needed them around the house. Frames around the toilets were installed (luckily we also have a downstairs toilet, which made it easier for her). So that she was still able to get out and visit shops and the town centre we borrowed a wheelchair from the Red Cross Society whilst the process of being assessed and obtaining one from Wheelchair Services proceeded. During Oct – Dec Lynne’s condition did not appear to have deteriorated to any great degree. She was able to get around the house with the aid now of two walking sticks and she was still able to do housework etc. albeit at a slower pace. Cupboards in the kitchen and other storage around the house were re-arranged so that “every day” items were in easy reach for her.
At the time of Lynne’s assessment of her “needs”, Lynne was still able with a bit of difficulty to get herself up and downstairs. And it was suggested by social services that the open plan staircase we had, be enclosed with a balustrade so that Lynne had something to assist her on both sides of the stairs as opposed to just one side. Rather than allow social services to install their “two planks of wood” style balustrade I built and installed one myself.
By December though Lynne was finding the stairs a much bigger struggle and so we sent off for brochures for a stairlift with the plan of having one fitted after Christmas and the New Year.
Our daughter who lives a couple of hours drive away and has her own family was a great help during this period, visiting and staying over every other weekend.
By Christmas 2010 we were kinda back on an even keel after a difficult and trying year and we had my parents stay with us over the Christmas period.

The feeling of a steady ship was rocked though on New Years Day when Lynne who had been walking to the kitchen (with two walking sticks) suddenly fell. A trip to A+E revealed that she had fractured both bones which attached to her ankle.
After a couple of weeks in hospital Lynne was discharged. Because of Lynne’s weakened muscles caused by the MND, the hospital would not discharge her sooner until they had found a safe method where Lynne could transfer herself from a bed to a commode and an 8 week intermediate care package was set up to cater for Lynne’s needs when I was at work.

Because of Lynne’s MND the use of crutches was a non-starter, she didn’t have the strength in her muscles to swing herself forward on crutches. Any unaided mobility with a leg in a cast and weakened muscles would a great risk. Whilst her ankle healed Lynne have to remain in bed or sat in a chair. So that she did not feel isolated upstairs in the bedroom, I moved our bed downstairs for the 8 weeks it took for her ankle to heal. After which, physiotherapists and occupational health managed to get her walking again using a walking frame. At last the bed could go back upstairs. By this time I had had a stairlift installed. And a community alarm installed so that Lynne could summon emergency assistance if she needed it when I was at work.

Due to the MND, Lynne does not sleep very well; she is very restless in bed and often wakes up two or three times during the night. I was finding this very difficult to cope with, especially as I work 12 hour shifts, leaving the house on day shift at 0515 to drive to work. We agreed that although we didn’t like it, it was essential that we now have separate bedrooms.

Even though Lynne was now able to get around the house again with the aid of a frame, she found that doing more than getting herself to the toilet or making herself a drink was just too much for her. She just didn’t have the strength in her muscles to do anything else. And so I found that all the household chores: cleaning, cooking, washing, ironing, shopping etc. which I had been doing “temporarily” while Lynne’s ankle healed were now mine full time.

Over the following months and up to this point in time, Lynne’s condition has deteriorated. In October she found that she was unable to walk at all, transfers having to be made either with a hoist or manually lifting her. She can no longer dress or bath herself. At present she can still manage to feed herself with a spoon if meals are cut up for her. A care package has had to be put in place to assist Lynne with getting to the toilet at times when I am at work.
Visits from our daughter have reduced considerably this past 12 months, we’ve seen her maybe 6 times in the past year and they have not been visits where she has stayed over.

As for me, I’m still working 12 hour shifts (somebody has to pay the bills). 3 day shifts followed by 3 night shifts followed by 3 rest days. I get Lynne to the toilet and back to bed before I go out to work. Then care workers visit 3 times during the day to get Lynne to the toilet and get her washed. I then get her up when I get home from work at about 1830 before preparing us a meal.
When I’m night shift I get Lynne to bed before I go to work and then care workers visit to get her to the toilet at about 2130-2200. I then get her to the toilet when I get home from work at 0630 and put her back in bed while I grab a couple of hours sleep.

Just a side note regarding care workers which annoys me: Lynne has to have two care workers to get her out of bed and onto a commode using a sling and hoist and then back into bed. I manage on my own to do that and much more: I get her in/out of the bath, get her downstairs when I’m at home. In and out of the car.
There’s more I could say about care workers but this isn’t the time.


My rest days are taken up with catching up on the housework, shopping etc. Even though it makes it more difficult for me, whenever I go shopping I take Lynne with me so that it gets her out of the house.

Yep, like all carers; I often feel as though I have two jobs. I come home from work to start another full time job. “Me time” is non-existent and ceased many months ago. Even watching the TV can be a challenge at times as I now find I often fall asleep in front of the TV. Everything I do is centred on Lynne even though at times it is very difficult and frustrating. And yep I often feel alone and isolated. Friends I used to have prior to Lynne’s illness have all faded away.

4 or 5 months ago the Clinical Specialist Nurse who visits Lynne every month arranged with Lynne’s agreement, for her to attend a Day Centre at a local hospice, the idea being to give Lynne a change of scenery. When I took Lynne on her first visit to the Day Centre Lynne was greeted and fussed over by the nursing staff as one might expect. Eventually one of the nurses stopped fussing over Lynne and spoke to me saying: “As a carer you become a non-person, just a motor for the wheelchair”. I was left speechless and a little upset. It made me feel as though I wa
Hi Mal and Welcome to the Forum, You have certainly not bored anyone and this is an excellent place to vent all your feelings Image . It sounds as if you are going through living hell in many ways, MND is a dreadful disease and yet throughout your love and care for your wife shines through.

My circumstances are very different; I care for an elderly mother yet the feelings of no time for self, isolation etc. I too work to pay the mortgage and do not have more than an hour a week without either mother or work. Unfortunately, as you have found, friends and relatives often shy away from facing these issues, leaving carers on their own to cope.

Do you have any support locally, other than the care-workers? Can anyone step in for you at all, to give you some badly needed rest? I don't have any answers for you; I'm sure others will be much more useful but I assure you that on this Forum you are amongst people who understand and care . Just have a browse through the Forum and join in when you can.

Look forward to reading more of your posts, Take care, Anne
Mal, thank god Lynne has you. Welcome to the forum . The isolation is very hard
I hope it helps you, talking to us lot. they are a great bunch of
people here. nice to have you with us.
Take care
Minnie Image
Hello Mal. Good to have you with us.

Sad but interesting to read what has been happening with your poor wife, Lynne. And so tough on you now especially as you are still working. Bills dont pay themselves as my father used to say. And I know what you mean abou having TWO carers to do stuff which, when you are around, you do by yourself. Complete nonsense but you just have to go with the flow sometimes.

No time to write more now. Mum's lunch beckons. A woman not to be kept waiting. Bless her.

Thanks for sharing your 'story' with us. Yes, so hard on you both, Mal.

Take care and all good wishes to you.

Robert
Hiya and a warm welcome to the forum, plenty of support and advice to be found on here.

Karen
Hi Mal and welcome Image
We have to have 2 care workers at a time too, while I do everything (and a lot more of) on my own.......and sometimes I have to help them too!
You're doing really well Image
Thanks for the very warm welcome, much appreciated. And yes audrey you were right; it did make me feel better after I had typed out my post. Getting things of your chest certainly does seem to help.
Hi and welcome.Yeh,it`s a great place to chat,laugh,scream,cry,whatever.Hope you find it as useful as i do. Image Image Image
Hi there Mal,

Welcome to the forum...I am sure you will find this a very good place to spend some time! My grand dad had MND and as you know only too well, it is a horrible, horrible disease.

I am no longer a carer and just lurk around these parts nowadays....squatters rights and all that! I am sure though that so many carers will have a very good understanding of what you are going through. Im sorry that your daughters visits are less frequent nowadays but is it possibly that she finds it very distressing seeing her Mum having such a terribly tough time perhaps? It's hard isn't it, people can sometimes drift away like your friends simply because they don't know how to cope with the situation in my experience.

Anyway, welcome again.

Bell
Dear Mal,
I think you are doing a wonderful job but need far more help than you are getting. I know nothing of the disease, just wondered if you were in touch with anyone else who had cared for someone with it. I found that I learned far more from other mums with the same condition as my son than I ever did from the "professionals". Take care.