• All threads and posts regarding Coronavirus COVID-19 can now be found in our new area specifically for Coronavirus COVID-19 discussion.

    You can directly access this area >here<.

It's life Jim - but not as we know it!

jenniferjean

Registered User
Apr 2, 2016
741
Basingstoke, Hampshire
Yesterday one of the residents called round to say they are organizing a coach holiday and would we be interested. It was mentioned last year while on a day trip that we might book something longer than a day. Nothing definite has been decided yet as to where the holiday will be based, but the idea is to go somewhere that isn't too far. It appears there may be eight or more going and I said I'd give it some thought.
Well I was thinking about it at 5 o'clock this morning when I could no longer sleep. I don't think we can do it. I'm thinking about problems with incontinence although he is mostly dry, just the occasional accident. But what it would be like in a strange hotel. I'm also thinking about the walking, that's something he can hardly do at all now even with his walker. We'd have to just go our own way and not take part in anything organized.
Then there's the effect on him. I think he'd be so confused, more so than he is already.

And what about me. I don't think it would be much of a holiday. I'd be so stressed with trying to keep him happy and to fit in with everyone else. I'm getting stressed now just thinking about it.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,138
Kent
Hello @jenniferjean

I do think the time comes when a holiday would n[be more trouble than it`s worth.

Our last holiday was to Italy. We were on an organised trip to Pompeii and when we arrived my husband had a panic attack which resulted in us having to spend 2 hours on the coach until the party was ready to return.

If you are going to spend more time worrying about the practicalities of dementia than you do at home then I would think home is best.

It`s such a pity. I`m sure you could do with a few days away but whether you would be rested afterwards is doubtful indeed.
 

White Rose

Registered User
Nov 4, 2018
554
Yesterday one of the residents called round to say they are organizing a coach holiday and would we be interested. It was mentioned last year while on a day trip that we might book something longer than a day. Nothing definite has been decided yet as to where the holiday will be based, but the idea is to go somewhere that isn't too far. It appears there may be eight or more going and I said I'd give it some thought.
Well I was thinking about it at 5 o'clock this morning when I could no longer sleep. I don't think we can do it. I'm thinking about problems with incontinence although he is mostly dry, just the occasional accident. But what it would be like in a strange hotel. I'm also thinking about the walking, that's something he can hardly do at all now even with his walker. We'd have to just go our own way and not take part in anything organized.
Then there's the effect on him. I think he'd be so confused, more so than he is already.

And what about me. I don't think it would be much of a holiday. I'd be so stressed with trying to keep him happy and to fit in with everyone else. I'm getting stressed now just thinking about it.
Agree with @Grannie G after our awful trip to London sadly I can't see us doing any more holidays or trips, too confusing for him and stressful for me. There are organisations who organise dementia holidays for small groups e.g. Dementia Adventure. Every time there's a travel programme on TV my partner wants to go wherever it is, China was a recent one (maybe not!). Such a shame.
 

jenniferjean

Registered User
Apr 2, 2016
741
Basingstoke, Hampshire
Thank you both for agreeing with me. I did think I was being selfish but truly I don't think he'd be able to recall any of it later. I've also reached the point when I think if I'm to continue to care for him I have to put my own feelings forward too.
 

TNJJ

Registered User
May 7, 2019
1,409
cornwall
Thank you both for agreeing with me. I did think I was being selfish but truly I don't think he'd be able to recall any of it later. I've also reached the point when I think if I'm to continue to care for him I have to put my own feelings forward too.
Sometimes you have too. My eldest son is getting married in August.To get my dad to the location it would require 2carers ,,wheelchair and sickness pills. Plus change of clothes But as he needs either a raised toilet seat and a Sara Steady to get him to the toilet (dad can only do 12steps with a gutter frame.)he won’t be going. Too stressful for me and him..
 

Jossy

New member
Apr 4, 2019
6
I took my Husband away for 4 days last August, not far away from home, along with our Daughter & 2 Grandchildren (age 12 & 15) we had a lovely break. He loved having the children around, we had lovely trips to the beach, walks, a relaxing time. Since we came home, he has asked how long we're staying here. Where are the children? Do we own this house (we do) did we sell the previous house? (This is the only house we ever bought , we've lived here 38yrs) I go along with him but get tied in knots.
My advice would be, if in doubt, don't! It's not comfortable on a coach, you will be on edge in case of accidents etc. Is it worth even more stress? I wouldn't go away again. I long too but it's not worth the confusion. Hope this helps. I think you have to think of after effects when you get home.
 

Gfeb

New member
Jul 14, 2019
5
I've intended for some time to start a thread of my own and update it from time to time which would serve as a journal of our journey with dementia. Back in August I posted about my husband always finishing his sentences with "Jim". He still does it and I'm still not sure if he's calling himself Jim or he's talking to someone else. When I posted about that @Bunpoots came up with "It's life Jim - but not as we know it!" and said how that pretty much sums up living with dementia. So I thought that would be a good title for my thread.

For some time I've been aware of a few people posting on TP about having a bit of time on their own when their LO goes to bed, and I thought "why can't I do that". Usually at a certain time in the evening my husband will turn off the TV and hint that it's time for bed. I'm usually pretty tired by then and stop whatever I'm doing and hit the sack. But occasionally I'll want to carry on with what I'm doing, usually it's something I'm trying to read. I'll suggest he goes to bed but he always says he'll wait for me, so I stop whatever I'm doing.

But last night I decided that I would finish what I was reading and he would go to bed on his own. I've pretty much had to stop reading books as I don't get to concentrate enough, but this was an article that I really wanted to read. So I firmly told him that no he wasn't going to wait for me and that he was going to bed by himself. What a joke!. It was just like a child - "I need the toilet", "I want a drink". It went on for almost an hour by which time I was too tired and worn out to read.

I've tried going to bed early in the hope of having a bit of me time in the morning, but no as soon as I'm up so is he. I do enjoy crafting which is something I can do without the constant questions and demands interfering. But reading is something I haven't been able to do for some time. I just thought I'd start my thread with a bit of a moan.
 

Gfeb

New member
Jul 14, 2019
5
My husband is exactly the same he won't go to bed without me.I have built reading for half an hour when we go to bed into our routine which is working at the moment.I did try to get him to go to bed without me but he only ended up sitting on the bed fully clothed till I appeared.
do you have an help I have someone who takes him out for a couple of hours once a week which gives me some me time.I think tha r is vital.I still feel resentful at times that I am so tied to him now,but I have to remind myself that is not him it's the condition.We are all human and we need to put ourselves first sometimes.
 

White Rose

Registered User
Nov 4, 2018
554
Thank you both for agreeing with me. I did think I was being selfish but truly I don't think he'd be able to recall any of it later. I've also reached the point when I think if I'm to continue to care for him I have to put my own feelings forward too.
We all need to become selfish pigs (as per the book), it's the only way to survive unless you're an angel or a saint.
My husband is exactly the same he won't go to bed without me.I have built reading for half an hour when we go to bed into our routine which is working at the moment.I did try to get him to go to bed without me but he only ended up sitting on the bed fully clothed till I appeared.
do you have an help I have someone who takes him out for a couple of hours once a week which gives me some me time.I think tha r is vital.I still feel resentful at times that I am so tied to him now,but I have to remind myself that is not him it's the condition.We are all human and we need to put ourselves first sometimes.
So funny to read your post @Gfeb - my partner is the same won't go to bed or get up unless I do - I do the same re. reading, get us both to bed by 11 then I read for half an hour - peace! Mind you if he's in talkative mode I have to tell him to be quiet and go to sleep - feel like his mum!
 

Olliebeak

Registered User
Sep 13, 2014
132
Buckinghamshire
There are companies that run holidays for couples where one has dementia. They provide carers to help out, activities and outings plus the opportunity for the carer half of the couple to take some time off. Seems like a great idea that I have thought of trying (but I haven’t) - everybody is in the same boat and no embarrassment if PWD has a wobbly.
 

jenniferjean

Registered User
Apr 2, 2016
741
Basingstoke, Hampshire
There are companies that run holidays for couples where one has dementia. They provide carers to help out, activities and outings plus the opportunity for the carer half of the couple to take some time off. Seems like a great idea that I have thought of trying (but I haven’t) - everybody is in the same boat and no embarrassment if PWD has a wobbly.
I think if we do go away at any time this will be our only option. I'll wait until the warmer weather but in the meantime I might make some enquiries. It would have to be somewhere with little or no walking involved for him and it would be great if I could go off sometimes on my own. I'm sure that must be possible, don't you think?
 

Izzy

Volunteer Moderator
Aug 31, 2003
61,837
69
Dundee
I think if we do go away at any time this will be our only option. I'll wait until the warmer weather but in the meantime I might make some enquiries. It would have to be somewhere with little or no walking involved for him and it would be great if I could go off sometimes on my own. I'm sure that must be possible, don't you think?
I’ve not used these myself but I wondered if it would be worth having a look -

https://dementiaadventure.co.uk/what-we-do/our-holidays/

http://www.mindforyou.co.uk/

https://www.disabledholidays.com/about/dementia-supported-holidays.html

https://www.telegraph.co.uk/travel/...es/holidays-for-people-living-with-dementia-/

https://revitalise.org.uk/break-theme/alzheimers-breaks/
 

jenniferjean

Registered User
Apr 2, 2016
741
Basingstoke, Hampshire
I can't believe my luck. I have been thinking about possible respite, not just yet but not far off. I was given the name and telephone number of a care home that was recommended, so I telephoned this morning for details. I left my number for someone to call me back.
My husband heard me and asked me who I was talking to. So I decided to come straight out with it and I told him I was contacting a place where he could stay if I had to go away sometime. "After all" I said " you wouldn't be able to look after yourself would you?"
He thought about it and then agreed that he would need someone. I asked him if that would be okay and he said "well it would make a change. I could go and see all the old wrinklies".
After reading on here about PWDs being uncooperative I certainly wasn't expecting that.
 

jenniferjean

Registered User
Apr 2, 2016
741
Basingstoke, Hampshire
Well at long last my husband has had his appointment at the mental health centre. The doctor seemed surprised that my husband hadn't been seen by a mental health doctor since his first diagnosis of MCI which was about four years ago. Which is strange considering the fight I've had to get this appointment.
The doctor asked loads of questions and then did a quick test with hubby. He scored 12 out of 30. The doctor told me that anything under 13 they consider as severe Dementia. He was unable to say what type of Dementia, his opinion was Alzheimers. He was surprised that my previous GP had told me that it was definitely Alzheimers, but he is going to arrange for a CT scan.
He has told me to go ahead and give him the newly prescribed Menantine along with the Donepezil and he wants to see him again in four weeks.
 
Last edited:

White Rose

Registered User
Nov 4, 2018
554
Well at long last my husband has had his appointment at the mental health centre. The doctor seemed surprised that my husband hadn't been seen by a mental health doctor since his first diagnosis of MCI which was about four years ago. Which is strange considering the fight I've had to get this appointment.
The doctor asked loads of questions and then did a quick test with hubby. He scored 12 out of 30. The doctor told me that anything under 13 they consider as severe Dementia. He was unable to say what type of Dementia, his opinion was Alzheimers. He was surprised that my previous GP had told me that it was definitely Alzheimers, but he is going to arrange for a CT scan.
He has told me to go ahead and give him the newly prescribed Menantine along with the Donepezil and he wants to see him again in four weeks.
My partner hasn't been seen by anyone since diagnosis except for 5 mins once a year to review meds. We moved house in November to a new area, new GP hasn't requested to see him. I don't know if there is even a mental health doctor where we live. Don't suppose there's anything they can do anyway but, as I think we've mentioned before, it seems like we are just left to our own devices.
 

jenniferjean

Registered User
Apr 2, 2016
741
Basingstoke, Hampshire
My partner hasn't been seen by anyone since diagnosis except for 5 mins once a year to review meds. We moved house in November to a new area, new GP hasn't requested to see him. I don't know if there is even a mental health doctor where we live. Don't suppose there's anything they can do anyway but, as I think we've mentioned before, it seems like we are just left to our own devices.
My husband hadn't had a review of his meds for a very long time. Our GP left and without seeing my husband the new GP prescribed new meds on the advice of the mental health unit without him being seen. This was why I pushed and pushed for an appointment. I refused to give him the new meds until he had been seen.
 

Sarasa

Registered User
Apr 13, 2018
1,239
That sounds very positive @jenniferjean . I was horrified when the Memory Clinic prescribed risperidone for my mum without seeing her or knowing her circumstances. She was living alone, no help coming in, getting in a total muddle with her other medicines, and had a history of adverse reactions to drugs.
 

jenniferjean

Registered User
Apr 2, 2016
741
Basingstoke, Hampshire
Yesterday we went to a Dementia social gathering in the hope that I would make contact with other carers. I didn't, but there was a talk being given about depression and stress. At one point we were given information about the various reactions to stress, one of which was the need to go to the toilet. I thought about it and suddenly made the connection with my husband's need for the toilet. He does go quite often but I now realise that sometimes if I am getting stressed over something he always does go almost immediately to the toilet. So although he doesn't show any other signs of suffering from stress (I've always thought he seems laid back about his condition) that maybe his reaction to me being stressed is to get stressed himself. I feel stupid now that I hadn't made that connection before.