Hi Melly1, I hope your ops have proved successful and in the past for you. How did you manage getting in and out of the car? My mum needs the front passenger seat and Jack has always sat in the back but I’m wondering how easy this is going to be for him. I know it might sound harsh but my mum’s needs have to be taken into account and I don want to jeopardise her well-being. She’s 89 and has Alzheimer’s so I know I’m on borrowed time. The car is her lifeline as much as it is Jack’s, my stepdad. Before the accident he could move about ok so things worked out fine. He’s 74 in August and has dementia, so I’m expecting this to be a slow recovery. x
A couple of points: double check on travelling in a car. Driving is out for 6 weeks, and while that involves use of pedals, etc., the jolting in a car may be a concern. I’d be very wary: when my mother-in-law had her hips done she was told not to go in a car for 6 weeks. She would have been a passenger. For clarity: the adhesives used in hip replacements take a while to “cure” fully. You do not want the joint to separate. Make it clear that’s why you’re asking.
Susieq’s idea of a rotating cushion is a good one but it won’t be particularly comfortable. It’s job is to make getting in and out of the car easier. It may need extra padding on top!
Going up and down stairs with crutches (I had knee replacements) takes a lot of concentration, you have to move crutches and legs in the right order. I’m concerned that as dad has dementia he may not remember how to do this. The last thing you need is another fall. It’s VERY important to take the pills and do the exercises after this sort of surgery, there is a “window of opportunity” to regain full movement. Will dad remember and cooperate to do these?
Just found time to read through all the information you’ve given me and it has been so, so helpful. I cannot thank you enough.
You’re very welcome. The team at Carers UK have put some really good guides together and dementia UK is helpful…so I’m glad their work can help and that I could connect & link you to it!
From the experiences and advice everyone’s shared, things won’t be easy on several fronts so I hope you have someone to chat to. Sorry to say but priming for the worst and being pleasantly surprised has been my low threshold of expectation.
I’m impressed you got through all the info!
If you can let us know how you get on & any queries. take care
So sorry to hear that Graham’s recovery is still ongoing. Totally agree about life - it can be tough. Just when I thought we’d got our freedom back now my girls are older (though still at home), I feel like I’m back to being with toddlers who need constant support. But I’m glad they have me and I am trying my utmost to give them both the best quality of life possible.
I do hope his BP becomes more manageable and you are able to enjoy every day as much as possible. You still have each other and at the end of the day, that’s all that matters. Sending big hugs to you both.
Even our GP said to me recently ‘Poor Graham really has had some major problems with his health recently.’ Then he went on to tell me he needs to keep ME well so I can look after Graham. Gee thanks Doc !!! Now I know my role in life.
Back to see him on Monday - G’s BP this morning while still in bed was 209/98 - that’s despite taking the medication …HELP !!!
Oh gosh Chris that sounds way too high. Must be such a worry for you. Hope your BP is ok x
oh Geez! Thinking of you BOTH, hope your own BP is not too high.
I’m not even touching the GP comment otherwise I’d be ratcheting up my BP!
Crossing my fingers you get the day out you both wanted, without issues
Just an update: spoke to OT and said Jack coming home straight from hospital not the best idea and asked about the rehabilitation unit in the hospital. She agreed to get discharge team to contact me.
Before I spoke to them I read through ALL the info and links you have offered. This gave me so much confidence in putting my point of view over.
The Discharge Nurse I spoke to was already aware of our situation at home. She listened. She said the rehab unit was not appropriate as Jack would be in a room on his own and because of the dementia he would not be able to remember how to press a button to ask for help. She said he would need 24/7 supervision and this would not be available there. (Which proved my argument for him not being discharged home.)
She is arranging for a social worker to contact us about a Discharge to Assess bed, which would be in a care home and funded for 28 days, after which a further assessment would be made.
This would be so much better all round, giving us all a little breathing space and for Jack time to heal a little more before coming home. Fingers crossed.
Thank you so much for all your input. Can’t explain how grateful and relieved I am. xx
YEEEESSS! Phew! keeping fingers and toes crossed. Big kudos to you for advocating for Jack’s needs AND your own!
as a tip - try to get everyones first & last name and a telephone for them. You’ll find the number of people multiplying, and it’s surprising how quickly info gets disconnected.
Cheering you on
Hi Tracey, definitely worth it. I was born with hip problems and developed osteoarthritis in my mid 20s as a result. The ops removed that pain and once over the operation - was very glad I had them done, as I was virtually pain free, though ached if I over did it. They aren’t perfect but a lot better than before the op.
Your Dad won’t be able to get in the back seat at first, he well if his rehab goes well but that will take time.
I honestly think he needs a rehab placement and pending on how that works out, you will know if returning home is the best thing or not.
Also bear in mind that a hospital stay, an operation and the anaesthetic is challenging for most people but likely to cause trauma in someone with dementia. Does appear as he was in himself? Many develop delirium in hospital.
I’m not trying to alarm you, but you need to be armed with the facts.
Hi Melly, very pleased to hear that your op’s have given you a better life than without them. It’s surprising how much we all take the little things for granted until we don’t have them anymore. You have faced challenges from the get go and here you are now advising and reassuring me and I suspect countless others.
I am lucky that we have plenty of dementia groups in our area and I’m just beginning to realise how valuable their support is. I have learned so much from them. Also, I’ve attended countless sessions at the Memory Clinic which has informed me on all aspects of dementia, including delirium- so I know what to look out for. The one thing we never covered was about hospital procedures, discharge etc and so I feel very blessed to have been able to get support from you guys.
Thanks again xx
Many thanks Charles, you make a very valid point.
Tracey, its great they are taking your concerns seriously. Make sure though that he will get the physio input he needs too and this is part of his care plan - it gives you a better chance of pushing for it to happen.
Oh Victoria - 4 weeks before G was admitted to hospital - again - my BP was going over 200/110. I got an appointment with a nurse - I asked for a doctor - and she only focussed on the headache which was the symptom - I TOLD her what the problem was. She prescribed a painkiller which they didnt have in stock for 3 days and when I eventually got it I read the leaflet - “Do not take if you have high blood pressure”!!
Pharmacist from the Surgery rang me back and said ‘DONT TAKE THAT! You need to see a doctor F2F ASAP’… I said that was what I had asked for last week… Saw GP next morning and he started me on tablets to reduce BP… They are working but I get blips when some idiot f***s about with Graham’s situation or is just a complete idiot over something straight forward… Hardly surprising as I am being protective of him as he cannot help himself all the time.
We see GP about HIM on Monday and I am sure G will mention his worries about me and GP will read between the lines if I just stay quiet and possibly suggest I make an appointment to see him again…
My main issue is exhaustion TBH. Like so many of us Caring is 24/7 and trying to second guess things G is going to do or need.
Like earlier today when he had a shower and when he had finished I commented there was a strong smell of urine and perhaps it had drifted in from outside. Just got him to bed and went to move the bedroom bin… He put in a pair of incontinence pants. I nearly vomited - asked him how long he had been wearing them… 3 or 4 days !!! No wonder they stank!!!
Now I need to make sure he puts on a fresh pair each day. Just another thing to check as he doesnt realise when he has a minor leak or dribbles… I notice the floor around the loo, but he doesn’t… He thought he was saving money by using them for two days - we have to pay for these pants… It reminds me of my Dad who at 93 used them instead of heading to the loo when he needed a wee - like a baby with a nappy…
Sorry started rambling then.
Hope everyone sleeps well. Would be nice if I can make it past 4am - or even 5am tomorrow morning…
Chris, have you asked the Continence Nurse at the GP practice to supply them free?
Sending some big empathy hugs to you Chris!
I was going to ask similarly to BB about the GP practice or district nurses providing pads…I hope if you do buy them you get VAT removed from the price, for the chronic condition - Each time I got extra bed pads or urinal bottles from the ability superstore online, I didn’t pay VAT…VAT exemption – Ability Superstore
Oh @Tracey_22051 a Urinal bottle could be a good idea if you’ve not thought of that already IF Jack returns (much) later
Hi BB - we get certain supplies free but they refuse to supply ‘pull ups’ which are the best for him so I by them from Age UK who are the cheapest supplier I can find. There’s no VAT on them and TBH they are not THAT expensive (take into account the reduction in washing costs/time.
His continence is way better than it used to be - thinking back to when he had major floods and I was changing the bed most nights. The ‘problem’ is him THINKING there have been no dribbles or leaks and reusing the pants… I just need to educate him again!!! (for educate read ‘NAG’)…
Chris, I have similar problems with Jack. Getting down on my hands and knees to scrub around the toilet has actually damaged my knees! We sourced disposable toilet mats, originally from Canada but then through.Amazon and that alleviated some of the problems. But they are expensive.
Like you, I was washing the bedding almost every day - 3 layers to protect the mattress is no mean feat. We got the pull-ups which did help enormously- Aldi is the cheapest around here. We call them his night shorts.
Then the urology dept decided that he needed a catheter, despite previously discounting this because of his dementia. But the damage being caused to his kidneys could not be ignored.
Whilst this has made life a little easier on my knees, the catheter has not been without its own problems - the biggest being when he forgets what it is and starts fiddling with it. We’ve had to replace the mattress, 4 pairs of slippers etc. He gets very defensive and then challenges his anger and frustration directly at me, which has been awful.
Last week he almost pulled the darn thing out completely and his bag was filling with blood. The District Nurse rang an ambulance and we ended up at one hospital where they sorted everything out. My daughter came to collect us and when we got home, Jack got out of the car, promptly fell over and broke his hip - and another trip to a different hospital and here we are now!
As for the exhaustion of being a carer, I totally understand. My sister and brother in law took mum and Jack for a week. On their return, sis asks what I got up to and when I said I’d slept most of the time - she just didn’t get it.
I’m sorry for the outpouring- but once I started, couldn’t really stop and I have to admit it feels good to offload.
My main point in responding was to tell you about the disposable mats and Aldi’s pull ups. I take loads of supplements etc and Metatone Tonic, which helps keep me going.
Hang in there Chris, but you have to make sure your GP understands your needs just as much as G’s. Your role as a carer should never be understated.
Sending big hugs