My name is Phil.
I’ve been caring for my Wife for some 20 years. She was diagnosed with a condition called Transverse Myelitis which is a neurological problem. The nerves in the spine are damaged which affects various mobility functions one of which is the ability of walking.
As time has gone on and in the past year she has become at the stage where she cannot stand without a stand aid. I have to transfer her from chair to commode and back again and also into bed.
We have carers coming in the mornings which is a great help but the rest of the time it is me, 24x7
Just recently I have started to feel very isolated and trapped. This is not what we wanted when I retired back in 2015. We were active and I loved the interaction with people whether I knew them or not. Now I see nobody and my frustration is rubbing off onto my Wife.
Thank you for listening.
Hi Phil, welcome to the forum from a sunny New Forest. I know Portchester well, my late sister in law live in Castle Grove.
I have been a carer ever since my son was brain damaged at birth, mum was virtually housebound since about 1976. I used to be good at juggling everyone’s competing needs, but then as they got older, so did I. What I could do easily became so much more difficult, then I had major surgery and everything changed forever.
Mum has now passed away, and my son lives in his own flat a few miles away, but HCC still dump all sorts of jobs on me, which I’m now challenging with a solicitor!
Tiredness is my biggest enemy. It’s really important to have help, and take regular breaks.
When did you last have a Carers Assessment?
They should be able to arrange for someone to be with your wife so you can go out and about, knowing that she will be perfectly safe. Does she have a falls alarm, and a pendant to call for help if you are not around? My son was supplied with an Oysta which hangs round his neck as a rule. One day I accidentally dropped it, within seconds a voice was saying “M, are you alright”.
When did your wife last have a Needs Assessment?
Do you have any domestic help, is your home as labour saving as possible? Dishwasher, tumble dryer?
After I was disabled in a car accident, my eldest son bullied me into removing every single border in the back garden and all the apple trees, to make it absolutely flat and easy to mow. I hated doing it, every plant had happy memories, but so much easier.
If you love your wife so much that you are prepared to dedicate your life to caring for your wife, in return she should love you enough to let you have a 2 week break now and then.
Nothing will change unless you give change a nudge in the right direction.
If you get ill from exhaustion, your wife would have no option but to move into residential care permanently.
So isn’t it in her best interests to let you have time off to keep well?
We have a lot of equipment provided by the OT departments, this includes Stand Aid, Hoist, commode that doubles up as a shower chair, profile bed, oxygen concentrator and spare O2 bottles. We have a falls alarm and keysafe which the emergency services, carers and some neighbours know the code.
We haven had an assessment done for some time and like you suggested I think we need to get one done.
My Wife bedroom is in the dining room and I had a walk in shower built through the wall into the integral garage. Earlier on she could go upstairs to bed so I had a vertical lift installed from the dining room into the master bedroom above.
I had the Kitchen redone with lower worktops and sliding door oven. This was to enable my wife to use her powered wheelchair to go into the kitchen. As her mobility got worse she now sits in a recliner all day except for me getting her on the commode or when we occasional go for a drive in our mobility WAV.
The drive way is block paved with the drive ramped up level with the threshold of the front door. This makes wheel chair access easy. The front door and internal doorways have also been widened for her powered wheelchair.
I understand about getting tired as many a time I have just sat down and then she needs something else. I then get annoyed and irritable.
I do try and get out for a drive on my own sometimes but end up aimlessly driving around.
I know Castle Grove and not live far from there in “The Keep”
Thank You for listening and responding to my post.
I value your suggestions.
Hi Philip, has anyone ever mentioned NHS Continuing Healthcare to you?
It’s not easy to get in Hampshire, but your GP should refer you and enable an initial “checklist assessment” to be completed.
Google “NHS Continuing Healthcare Framework” to start with.
Then look at the assessment process. All the care your wife needs would be FREE of charge if she was approved.
hi Philip - 20 years is a long time to be a carer and I can completely understand that your retirement is not turning out as you expected. I cared for my Mum for 14 years before she died last Christmas and it was at times exhausting. Alongside caring for Mum I have an adult daughter who has learning difficulties and is on the autistic spectrum but she moved out a few months ago and lives with her partner but he is very similar to her and they need SO much support.
I feel envious of friends who can just go on holiday or away for a weekend as I seem to be permanently on call. There is no way they could holiday abroad alone so they always come with us (not in the last 2 years obviously).
Have you looked at support groups in your area or do you have Mens Sheds or similar groups? Does your wife get Direct Payments and could you use these to have someone come and sit with your wife for a morning or a day and allow you some time away from caring?
Can you take your wife out for a drive? Do you have children who could help out?
Welcome to the Forum, you will find help and support for others who are going through similar feelings of isolation and loneliness
.If you are comfortable telephoning or emailing Carers UK, they may be able to offer you further support and advice in relation to:
Benefits and financial support
Your rights as a carer in the workplace
Carers’ assessments and how to get support in your caring role
Services available to carers and the people you care for
How to complain effectively and challenge decisions
Our Telephone Helpline is available on 0808 808 7777 from Monday to Friday, 9am – 6pm or you can contact us by email firstname.lastname@example.org
Carers UK is running online weekly meetups for carers to take some time for themselves and chat with other carers. Feel free to join if you’d like to and there’s no pressure to share anything you don’t want to.
You can find information on how to register for our online meetups on the following pages:
Care for a Cuppa: https://www.carersuk.org/help-and-advic … ne-meetups
Share and Learn: https://www.carersuk.org/help-and-advic … e-sessions
I hope that Carers UK can help you to feel more supported.