I am now a full time carer and starting to struggle

Over the last 12 months I have done less and less work and have now reached the point where I am unable to do so because I am now caring for my wife 24 hours a day.
I am hitting the retirement age this month and a financial advisor from Parkinson’s UK has helped me to understand what help financially we can get. This is a headache but one that I can sort out and hopefully one that we will be able to manage our finances on. My main concern and now a worry, is that my wife is now dependant on me and has become incontinent during the night to such an extent that she is wearing 2 lots of ‘night pants’ ( as we prefer to call them rather than nappies) but during the daytime she visits the toilet on multiple occasions just to sit on the toilet waiting to wee. This isn’t too bad while we are at home but if we go out anywhere, we spent most of the day looking for a toilet because she says she ‘feels like she needs a wee’ but 8 times out of 10, she sits but doesn’t pass anything but will sit for 5 or 6 minutes. This is something that I am struggling to understand and cope with and even though I do not want to go out without her, I feel this will be happening any time soon. She also has multiple falls each day with her ‘freezing’ and she cannot understand the stop, wait and concentrate before moving on. She uses her 3 wheel walking aid and this does help but isn’t stopping her falling. Sorry if I seem to be having a moan and a feel sorry for me moment but I need to get it off my chest. We have recently moved to a bungalow and have not yet been contacted by the local P.D nurses. Thanks for listening.

Sorry if I am stating the obvious, but do check if she has a urine infection.

Re the sitting on the toilet. The fear of needing it can bring the sendation of it. Also if your wife has lack of bladder muscle control, one can feel the sensation of needing to go but the lack of good muscle control will prevent one from doing so.

When you go out can you plsn beforehand where the bathrooms are to save you the headache of looking whilst out?

Hey Mr.Mike,

I just want to say this sounds exhausting for you. You have my sympathies for the increasing demands on you.

I went through a similar increase in dependency on me by my father and over time found it was vital for me to regularly vent with a good moan or conscious rant. I found it very difficult to process it all and was regularly overwhelmed without a place or person to share. I hope you can find those spaces and people. I found this forum a great place to feel less lonely with the experience.

On a practical note I found that I really had to chase the P nurse after my Dad moved counties. They were difficult to track down for a while but after multiple voicemails and calls she was extremely helpful and swung into action and linked us up with many local resources so I suggest you keep being proactive rather than waiting.

All the best to you and your wife, Charlie

Hi mr Mike iv really connected with you & your issues. My hubby had the same toileting problems & rigid freezing. I took advice from this forum & got help from the GP. Medication to help bladder problems. Also sleep medication which helped both of us him getting sleep meant I did too. Using a jug & bucket helped not having to get him to the bathroom & back. These are suggestions you could try. Good luck :crossed_fingers:

Hi Mr. Mike,

Before anything else please, please understand that your statement:
“Sorry if I seem to be having a moan and a feel sorry for me moment but I need to get it off my chest” is really absolutely unnecessary.
This is the exact forum to have a moan and feel sorry for yourself.
I do understand your situation and it is incredibly difficult.
A fair amount of people on the forum have gone through the exact same thing and relate totally to your situation and can give suggestions as to how they coped.
Please whatever you do, don’t stop moaning, and actually crying when you feel you need to, it releases stress and is really cathartic.
The bullshte about “cowboys don’t cry” is exactly that, bullshte.
Anyone who cannot cry in situations like this have major problems in their lives and within themselves.
And don’t feel embarrassed about crying we all do.

1 Like

I am going through the very same thing but had no idea wanting to pee all night and urinary problems was due to my husband’s Parkinson’s D. I even phoned his Parkinson’s team to find out what I should do, they told me to phone 111. He hasn’t peed for over 2 days now and is terribly confused. I was told he’d need catheterising but there was no one available to see him, they’d try and get someone tomorrow but no guarantees.
We haven’t ever had a PD nurse, up to a year ago it was just yearly consultant appointments but as my husband put himself down for research we supposedly have instant access to a consultant… but it’s Friday and no one is available hence 111.
It’s a very lonely situation and I too am struggling, so glad I found this forum.

Morning Mr.Mike I have PD but at the moment plodding on But i had my mum in very much the same as what you are going through. Did you know that all of us have a social worker to help she will assess you and your wife’s problem and arrange for people to come in to help you. I know its very hard for husbands to have help as they feel that they have let the other half down, but if ever your ill ect you will not be able to do the task that you do, so I for the point of not loosing your sanity get help please.

Morning Lilyblue please read the post which I have just sent to Mr Mike your local council are your first port of call please do contact them and put a message on to let all members know how you have got on.

I’m truly sorry to hear about the challenges you and your wife are facing. Caring for a loved one can be incredibly demanding, both physically and emotionally. It’s completely understandable to feel overwhelmed and to need to express your concerns. Your dedication and love for your wife shine through your words, and it’s clear you’re doing your best in a difficult situation.

Seeking financial assistance and support from organizations like Parkinson’s UK is a positive step forward. Additionally, reaching out to local Parkinson’s disease nurses could provide valuable resources and guidance for managing your wife’s symptoms and caregiving needs. Remember, it’s okay to feel frustrated or exhausted at times, and seeking support for yourself is just as important as caring for your wife. You’re not alone in this journey, and there are people who are ready to listen and help.

Hello Mr Mike
Sorry to hear of your situation, I can commiserate with you being a wife of a Parkinsons sufferer.
My first thought is very much - Do you actually WANT to retire, regardless of finances ? I feel looking back (I am now almost 69) I very much wish I hadn’t retired early from my job (I retired aged 64, as against 66 my official state pension age). I had reduced my working week to 3 days and I wish now I’d introduced a carer to enable me to continue working. I’ve founf my world came in even more once I’d retired. I missed people, I worked giving advise to young families and was very much in contact with different people far away from living the Parkinsons life. I realised (too late) how much I benefited from the outside contacts. I think this missing your work life is in-itself part of the change involved in retiring but it was double fold when life closed in around me to be predominantly Parkinsons based.
So think carefully about what you personally want.
My next thought was Parkinson’s nurses are unlikely to contact you, have you moved area or are you remaining with your Parkinsons team ? You will need to contact them.
Of course a GP appointment should also be arranged to rule out a UTI but does sound more like an ongoing Parkinsons problem which your wife’s Parkinsons team are best placed to help with. Not so easy to use jugs snd buckets for a woman as a man of course and I understand that catheterisation isn’t so easy in a female either.
Have you carers involved or are you dealing with all yourself ?!
Sadly I find myself going out alone or with friends. My husband has had Parkinsons for 13 years but Sepsis put him in s wheelchair, he cannot stand. Going out with him is tough to say nothing of the physical effort required of me to load and secure him in the car.
Everything lands on me, all decisions, all organising, all day to day life including dealing with garages etc etc. it gets totally exhausting.
As to finances, if you have carers allowance that will be taken away from you once you receive state pension age. I hope too (presuming your wife is not already state pension age) that your wife has applied for PIP. This is my rant - if she is pre pension age and hasn’t applied for PIP (used to be disability living allowance) Please do so soonest ! PIP is the only benefit that gives access to the mobility scheme thereby allowing you to have a mobility car. Apologies if you’re already with the scheme and know about this !
It came as a huge surprise to us to find that because my husband was 66 when diagnosed and state pension age for him was 65 he could not claim. So it was a huge expense and an ongoing one to have to buy a car that takes a wheelchair.
That aside my overall feeling is ensure you want to retire before you do.
Good luck and I hope you get some help for your wife soon.

1 Like

Yes, this was checked a couple of years back when she first started with the issue but thanks for the reply, sometimes The obvious is overlooked.

Hi Clive, Thanks for taking the time to reply. I am trying to get rid of the ‘Cowboys don’t cry’ thing that’s part of my DNA, I’m of the age where a man shouldn’t show weakness. I know this is wrong but it’s hard to change.

Hi Plus1, Thanks for taking the time to reply, it’s much appreciated, as it is with everyone who replies, Thank you all. I don’t really want to retire because I like doing what I do and on the odd occasion I do leave the house, it feels like a different world, doing normal things and talking about normal things and laughing with friends about mens ‘silly stuff’ and football etc etc. I don’t know how to go about doing both. As for the PD nurses, yes, we have moved to a new area and yes we have had the PD nurse transfer everything over to our new doctors, who in turn have transfered over to the PD nurses and specialist in our new area but we’ve been here for over 4 months now and still nothing. Maybe it’s time I took it upon myself to ring up and complain and badger them on a weekly basis ( I could do this because obviously I have nothing else better to do ) I do not have carers in yet but I think I have to get something organised soon because I cannot cope properly now, and even today 18th March, she has had another fall and we were at the hospital for 4 hours to be told she has a displaced shoulder and needs to have it looked at while they decide what procedure needs doing. This now means she is TOTALLY dependant on me even more, she can’t even open her tablet case with only one hand working. Right,
I’m going to make myself a coffee now or maybe pour myself a Guinness and relax. Thank you all for listening, I’ll be back on tomorrow as I find this a good way to release my pressure valve.

Hey Mike… it’s really stressful… my husbands care needs increased suddenly in January when his PD took a sharp decline. One thing I have realised is that, unfortunately, you do need to badger the services that should be reaching out to you… but because the state the NHS is in, they won’t. One thing I found that worked was to basically tell professionals that I was really struggling to cope and was looking at care home options… this got us back in with his PD nurse and team (he hadn’t had his regular yearly appointment scheduled and I think he had dropped off their radar). Also, I got a care needs assessment done by the local authority and had us escaled up the waiting list by telling them about incontinence and how I couldn’t cope.

We also just started using paid carers - just started doing the morning slot last week and this week they are doing lunch. It takes some of the load off - I work full-time but can work from home all the time if I need to. Again, when you get a care needs assessment, you can talk about the care package they can offer you… or you can just contract privately if you have the funds with a provider like Bluebird.

Keep coming here though!

Hi Mr. Mike,

Please ignore the bullsh*te.
Cowboys actually do cry, and those who don’t are psychotic.
Please, please go and have the checks done.
“Cowboys don’t cry” is not worth your life.

Hi MrMike
I’m glad you replied even if it is to clarify, as I fear, that you do not want to retire and always a safe place to rant.
There is help out there, but yes it is going to require some phone calls and believe me I understand that even doing that is a hurdle and feels too much, just another something that ‘you’ have to do. I get resentful that I have to deal with everything and somedays I don’t deal with it all atall well.
It’s a lonely world being a sole full time carer think very carefully before you step further into that role.
You are going to have to make some phone calls , maybe start with Parkinsons UK Helpline
‘’ Our Parkinson’s advisers can support anyone with Parkinson’s, their family or carer. Call 0808 800 0303 to get in touch. ‘’
Explain that you’re at your wits end and need help for you and your wife.
Search on the web for your local carers association, often listed on your county councils or borough councils webpage. Their information will usually be available at your local library too. Also same places to look for your Adult Social Services Number and call them say you urgently need help.
Have you made your GP aware you are a sole carer for your wife ? Make an appointment for yourself at the GP and go explain its too much you need help snd one way they can do some is hurry up your wife’s next Parkinson’s consultation. Don’t assume the GPs have made the connection that you are your wife’s sole carer.
Social Services and your local carers group will help you organise some carers to look after your wife.
Please make those calls - one a day they don’t all have to be done at once.
You too are entitled to a life snd it can feel very much like Parkinsons is taking both of your life’s.
I hope I’m not being overly dramatic and hope too that my sense from your post that you’re on the edge is wrong - maybe I’m portraying my own feelings. For so long I’ve stumbled along head in the sand not dealing with it all snd it doesn’t work just makes everything rear up and have to be dealt with in a fire fighting way. Now I’m rambling :see_no_evil:.
Just don’t retire if you don’t want to but will mean having to make some calls and include some carers into your life’s.
And return to the forum, to rant and please let us know how you’re doing Best Wishes Jane

Thanks Jane0804, The toileting issue is one I’m struggling to get to grips with as it takes all our time up whenever we leave the house and I get frustrated with her. I’ve been on to the doctors this morning and arranged an appointment with the GP because, after speaking to the Appointments team at the Neurology Dept, they said it’s likely to b 6 months before we get to see the PD nurse or specialist face to face, I could not stress to them enough how bothered I am over her daily falls ( averaging 6 per day now) and how frightened I am of her doing some serious damage rather than the breaks she is having at the moment and all the bruises she has. So I was told to tell this to the Doctor for him to arrange an expediated referral. It seems like I am going round and round in circles and I’m meeting myself coming back.

Hi I’m really sorry you feel your getting no where but please keep asking for help. You will be left struggling & worn out. I keep a diary & highlight bad times it shows to me & others how things are. I then have a clear view for doctors & others who are there to help what happening. Keep sharing your struggles it helps to talk