Hello, my first time here and I don’t usually reach out to people, I tend to sort things out myself.
However I am really struggling with life at the moment and any help would be great.
I have been married 25 years and my wife is the most important thing in the world to me. We have no kids together us but she has two from her first marriage. We’ve had a great journey together, we had a pub for a few years and generally loved life. We have both been faithful and are still in love.
She has had four spinal op’s and for the last two years is bedbound, also doubly incontinent and has a catheter.
For the last 3-4 years I have noticed a decline in her cognitive state and eighteen months ago she was officially diagnosed as having dementia. Luckily she generally is of a happy disposition although sometimes she can become sad for a while. She will speak if spoken to but will struggle to hold a conversation and for the majority of the time she will watch television.
We have a hospital bed in the frontroom and a gantry hoist.
I have reduced my working hours to 30 and work four, eight hour shifts from 12-8. this allows me to wash and feed my wife and enable her to sit out for a while when I work.
I have carers in when working and her daughter pops in for 3 out of the 4 days and is a big help.
My problem is that recently I am not coping well, seeing my wife in this state has started to affect me mentally, I am seeing a once vibrant woman reduced to how she is now.
There is a 14 year age gap, I am 56.
I am just acting out my life at the moment, pretending to people that things are fine when the reality is I have at times ended up crying to myself and wondering if I can manage another day.
I work at a hospital and the nurses are aware of my wife’s situation because of my altered hours. They are a great help and I have opened up to a couple of them, ( I struggle with asking for help) they as can be imagined are sympathetic and offered their help.
My question really is how can I get rid of this darkness that I am currently feeling and which is becoming frightening.
I go sea swimming which I enjoy but after I feel a sense of guilt that I enjoyed myself. I know ( I think) there is no need but it is still there.
I have even tried my G.P. with not much joy, he put me on some depression tablets and gave me some websites to look at. The tablets do not seem to be working and I know the surgery is busy busy so I have left it.
I hate feeling this down where I want to just curl up in the corner, this all feels very self centred but I need to keep well for my wife. She is unaware of this as I put on my happy face and try for an Oscar!
From my own experience, doctors are useless at understanding what long term caring means, so they write a prescription.
I refuse to live my life on pills.
Is your wife getting NHS Continuing Healthcare?
When did you last have a holiday?
Not a flippant question, you need to get away from it all to recharge your physical and emotional batteries.
I usually stay in Crete for 2 weeks every year, not possible last year, or this year.
The hotel is for single travellers only, it’s where I learned to live and laugh again after I was widowed.
I’ve met some new friends out there, we are 200 miles away from each other in the UK, but keep in touch through facebook.
Last time I came home my son said “How was it?”
I replied “Fantastic, I’ve walked, eaten, swum and laughed my way round Western Crete in 2 weeks and feel at least 10 years younger”.
Not bad for 3 “girls” who will be 70 next year!!
At home, I have many responsibilities, a brain damaged son and an ongoing battle with Hampshire County Council regarding his care.
You sound like you are simply worn out with the daily grind and responsibilities.
As a carer, putting yourself first sounds selfish, but it isn’t.
If you love your wife enough to care for her, then she must love you enough to let you go away sometimes, so you keep well.
Covid is making any social life difficult.
I’m in the New Forest, desperate for the holidaymakers to go home again. We’ve gone from less than 3 cases to over 300!
Apart from work and caring, is there anything you do on a day to day basis to relieve stress?
Have you ever had proper counselling?
Hello SaintJoe welcome to the forum
My lovely late husband had strokes, vascular dementia and other health issues. I too had very dark days seeing the decline from a man with a thirst to live and learn. Sadly he went into a nursing home. His consultant would not allow him home. His needs were too complex. For his safety and my well being.
The guilt monster!! I know that only too well. You need to learn to kick it off your shoulder,as it neither helps you or your wife. I’m sure your wife would not want you to feel that way! Do the things that help you, like your swim. Time for yourself is very important. Have you been in touch with the Alzheimer’s association? May be worth a try. Where I live we have Admiral nurses who supported me at the beginning.
Keep posting, it helps to offload
I wanted to welcome you to our forum, you’ve certainly come to the right place to link up with other carers who are experiencing difficulties at the moment.
I’m not sure if you are aware of our helpline, I’ve listed the contact number and email below for you. I also wanted to make you aware we’re also running weekly meet ups, it’s a great way of connecting with other carers and to take sometime for yourself to chat to others in similar situations. 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 to our online meetups at the following pages:
Care for a Cuppa: Online meetups | Carers UK
And of course, as promised, here is our Carers UK’s helpline should you need advice or support - Our Telephone Helpline is available on 0808 808 7777 from Monday to Friday, 9am – 6pm or you can contact us by email (advice@carersuk.org)
Thanks for replying.
Bowling Bun I spent many good times in the New Forest. I am from Southampton and would cycle to Lyndhurst, good memories.
Holidaying isn’t the answer for me at the moment as I am not in the “headspace” where I could enjoy myself but I appreciate your thoughts. Counselling is something I have been wondering about recently as I am starting to realise I may need help.
Thanks Pet66, I will look into the Alzheimer’s Association. As for the “guilt monster” (nice term,) I am trying. Posting on here and getting replies has helped, putting things in perspective has got my little brain twirling and given me a couple of ideas.
I do need to keep myself well so I can look after my wife properly and obviously myself, I am off sea swimming in a bit and that always rejuvenates me.
After my husband died suddenly, I couldn’t settle at home, so I took a very cheap break in Tiverton Best Western.
Not a holiday as such, just getting away from it all so the brain could calm down and I could rest - I had very little sleep for two months. I read a book meandered around doing not a lot.
However, it gave me some peace, I took a notebook, wrote down things to be done etc.as I thought of them.
I thought that the “old” me had gone, but the counsellor really helped me get things back into perspective.
I had a disabled son and a disabled mum, both wanting my time, although I myself was also recently disabled after a car accident!
I was encouraged to look after myself more, that it was OK to say No. Even better, OK to be vague about when I was going to do any job!!
I’m soon going to Devon for a couple of days, just for a break. Staying in the same village where I spent all my summer holidays with my grandmother. We were both keen walkers, I probably know more footpaths there than most of the locals. Some of mum’s family lived in the area for over 500 years. Little wonder then that as I drive over the hills from Dorchester to Bridport, hopefully fog free, I have the sense of “coming home”.
