Just getting so tired of constant Hospital and GP appointments for my Husband.
Quick count in my Diary. Over 40 this year.
Ordered three catheters for an appointment Wednesday. God knows what I've picked up from the Chemist but they ain't catheters. No way will be able to sort it for Wednesday.
Just felt like a moan. X
Hi Lynd, And you are absolutely entitled to a good moan and very welcome to it too. I'm happy I just stopped by to see if there were any new posts and can respond to you quickly. Is there any time worse than a Saturday night to realise that the chemist has given you the wrong items?
It is tiring constantly attending hospital appointments, on top of everything else there is to do.
I can't physically lighten your load, but if good wishes can help at all, then I'm sending all of mine and hoping you can manage to keep your chin up and keep on with the marvellous job you are doing for your husband.
Oh thanks for the support. You just lose your MOJO sometimes dont you?
We have come a long way this last year and managed two breaks away so lots of positives but this constant supervision gets a bit wearisome sometimes(as we all know). X
I would too, makes me moan hearing about it.
Hi Lynd, I think you are entirely justified in having a good old moan. Sometimes it seems as if the whole of life revolves around hospital, GPs, specialists etc.
I used to joke with my mum that we needed to take out a season ticket for the car park.
Something that I have started doing now is asking for home visits for dad and also for lots of other services such as opticians. It has taken the pressure off a bit.
I hope you are managing to get some respite though as it can be really tough otherwise. Helen x
I totally understand your frustration Lynd and you’re certainly entitled to have a moan. I have sometimes joked with Pete that he’s probably got a bed at the hospital with his name on it. There always seems to be an appointment somewhere.
I hope your dear husbands catheters are sorted out soon and properly and I’m sending lots of good wishes to you. Xxxxx
I am in a similar situation and I empathise with you. These days I lighten the load by asking if he can be seen at home. A big problem is parking and using his wheelchair.
He’s just come out of hospital and when visiting I was having to park outside the grounds and walk about a mile. He has a blue badge but I don’t.
You can use the blue badge if its for your husband in any car, provided he is with you.
Thanks for all of your support.
I tick along Ok until until people make mistakes or cancel and expect me to sort it out. Some days it is one task too many x
How frustrating.
I always check my prescriptions now,as I have been given wrong dosage/ item in the past.
Rang the Chemist this morning. After waiting on the line and lots of fadding around they told me his prescription was still on the computer. Didn't bother moaning just glad I've sorted it.
Had to make another nurse appointment for something else and their computer is down. I never realised that looking after one person could be such hard work.
Just over a year now since my Husband's brain injury. He is lucky still to be mobile. We have reached a stage where I have to challenge him a lot more. I have found he is constantly questioning me. I tell him to think about it because he knows the answer. He think and he does but this is a pattern that is driving me nuts.
Showering. Still have to prompt and supervise. He will never just do it.
Clothes. Won't change them without prompting.
A toe dressing and ultra dry skin needs attention. He seems totally unaware he has a toe or dry skin until I point it out to him. He knows he needs to change dressing and put cream on but can't be bothered. His OT says he should be challenged but. I am finding it all so exhausting. Just a 24 hour OT really.
For some reason I feel fed up with it all last few days x
I am in a similar situation so I have an idea of how you are feeling and yes, it is 24/7 and exhausting. My OH has high care needs and I am just managing to hold on because we are lucky enough to have lovely carers four times a day. They shower him every morning, put him to bed in the evening and just do what is needed at the other visits. Sometimes they chat with him while I go to the shop or take the dogs out for a walk. It helps me enormously psychologically as well as physically.
Have you asked social services for help? I do hope that you can get support if you want/need it. Luckily, I didn’t have to fight for help but I understand that sometimes it’s necessary.
Hi again Lynd, So glad you got the prescription mix-up sorted out. It's a small triumph but a triumph all the same.
I don't think you can avoid being down some of the time. It's such a challenge, the role of carer. No place for wimps! But please try to get a bit of 'you' time if you possibly can. If you can't take a break from your situation then at least make a conscious effort to find a few minutes a day doing something that relaxes you or that you really enjoy and will take your mind away from the everyday grind. And always remember that missing the odd wash or dressing, so long as it's occasional, will not make the sky cave in. You need that 'you' time to recharge your personal battery. We all know that any gadget with a dead battery is entirely useless, and that's pretty much true of carers too, so please take care of yourself as well as your husband. You are every bit as deserving as he is.
I think it is because the caring role has developed into the stage of having to constantly challenge him. I want him to be the best he can be so I won't give up however it gets very tough.
We do go out but the opportunity to go out for any length of time on my own is rare.
Think I will need to speak to the family about having a few breaks.
That sounds like a good plan Lynd. You are doing a wonderful job but you still need a little bit of time that's just for you.
I feel the same Lynd. You are lucky to have family who can step in to help. I am waiting for social services to provide sitters. We are on the waiting list for a local charitable organisation’s sitting service. I’ve also decided to use the DLA to pay for a sitter via an agency just once a week for a couple of hours.
Good idea Bella. Think I may use some of Jim's PIP for same x
My husband has Parkinsons and Dementia and is very demanding.He is getting worse so my patience is really stretched .I sometimes can't be bothered to help him which sounds terrible I know. He isn't like my husband any more just a demanding dribbling old man.
I am having a 4 day break on Friday and hope to return a nicer person.!!!
I shall be 80 in October and would love to have some one make me a cup of tea one day !!
At 80 the demands on you are huge. I can understand your feelings. You are not a robot. Have you any kind of help?
I have 2 hours a week domestic help and 2 hours gardening paid for by me.
I have no one to help me with him as we have no routine as my husband sleeps deeply at strange times.I wouldn't be able to ask helpers to come at a definite time as he might be asleep and wouldn't move !!
That is not a lot of help for a lady of your age. I am 65 and my energy is not good so you have my great respect.
What a day!
8.30 Nurse inspection of ulcerative toe.
9 am. Change of catheter(same building.
10.40 optician.
1pm OT
The bad news is OT decided to discharge my husband as she didn't feel she could aid him any further. Really on my own coping with his brain injury now.
What she probably should have said he has been visiting a long time now and he is holding up the queue.
Lynd - it sounds as if you are very much alone with this. 😟 Is there no other means of support for you? Have you had a carer assessment? Like you, I struggle but am very grateful that he has a nice team of carers. It helps me to cope and not just in a practical sense.
Hi Bella
I have family if I am desperate but they all work and have family so weekdays are out. I have decided to pay out of PIP. X
I had a telephone call from the Crossroads charity yesterday. His name has come to the top of the list so they are sending someone to assess for the sitting service. It’s on hold at the moment because he is in hospital but hoping to have the visit when he comes home.
Just wondered if you have Crossroads or something similar in your area? The GP surgery might have more information.
Hi Lynd, Disappointing news about your husband's OT coming to an end. It must feel like one more burden has been added to your list, as now you will have to be responsible for trying to keep him up to par. I guess it does boil down to whose need is, at that moment, the greatest, but it would be a better idea to give you personal access back to OT, so that you could self-refer for further assessment, if you see signs of deterioration again. And I can see that this might be the case.
I guess, in an ideal world there would be continuous OT for brain injury patients. Alas this is not that world!
Hopefully in your husband's case, and with your caring self to help him, you'll be able to achieve close to what OT was achieving with him.
Very best wishes once again, and you know we are here if you need to vent!
The time we spent with OT was good at first but nothing new happening. Think it was more of a link to someone who understands brain Injury for me. X
That's crazy.
I looked through our diary and we are at the same level 40ish appointments from Jan to Aug.
Some of these local GP, but alot out of town Leeds, Wakefield, Liverpool.
You mentioned something about collecting catheters from the chemist. Have you considered using an online service like Charter to order catheter related supplies? It can all be done online and they deliver. They are very reliable and you have the option to choose which ever product you like if you need to try something different.
They contact the GPs ect to get prescriptions.
One less job for you!
Will look into this properly x
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