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Apathy, mine!

Laura40

Registered User
Dec 10, 2017
97
England
Sure it is not just me! Some days I just get so fed up with things and go into a sort of shut down. My husband is not bothered, quite happy to do whatever I want whether this is hiking a mountain or sitting in bed all day watching a box set! ( not that we actually hike up many mountains...)
It's the school holidays ( yes I am a teacher) so the normal first week has just gone and I don't think I achieved anything, went along to one of his clubs and got tearful with friends that are keeping an eye for me. Reassured I suppose that this club is still one he is managing whilst I am at work and that his behaviour and condition is understood and supported. ( his pants were sopping wet when he returned from the toilet and not one person uttered a word) The sympathy however just made me feel very aware of my new role as a carer however independent he seems to be from the outside world.
I have three teenagers at home at the moment and went for a walk with one of them yesterday for some fresh air, he then went on to tell me how different my husband acts when I am not there. I was made aware that he paces from the sitting room to the front door waiting for me every working day amongst other things. Each holiday I am made aware of new symptons and the progression of this disease and I think this last month I have begun to be acutely aware of its effect on our family. Anyway back to the title of the thread... I was extremely apathetic this week, sat watching tele, doing absolutely the bare minimum, this resulted in me booking four days away which we leave for tomorrow, anything to make me acknowledge that the kids need to do more than watch me mope about the house. But apathy how do I combat it? I am sure it will return!
 

Szaitisja

Registered User
Jul 28, 2018
134
Hertfordshire
Hello Laura. Sorry to hear you are feeling like this. I do understand tho. I've been struggling with apathy for sometime also. There are of course better days and worse ones but it's so difficult to snap out of it at times. The friend I look after enjoys few activities, like doing crosswords ( bit hit and miss at times), playing dominoes and couple of other games and being read to. But there are days when I feel so down I have no energy for any of those small activities as they involve having a conversation while playing and there are normally 3 questions she asks over and over and over for several hours while i'm there. And sometimes it's difficult to reply to the same question for the 50th time with the same enthusiasm as the first 30 and she will immediately notice the change in tone of voice and then I'm in trouble. It's you really don't want to be here, do you? You are fed up with me, aren't you and similar for the next few hours. Normally i don't let it get to me to much but when feeling down it's not that easy and it hurts so much. And so sometimes after couple of hours of general chit chat i put tv on and we watch it for few hours. Luckily she used to watch a lot of tv and likes old comedy shows and Miss Marple, Poirot and that sort of thing. She doesn't concentrate for the whole lenght of the programme but we can sort of discuss it in bits during advert breaks a bit and it kills time. I don't really like focusing on killing time but sometimes when i really have no energy and feel low it's the only way to spend the afternoon/evening without it ending up in me in tears for hours and her then panicking that she upset me and saying she should really die cause she is trouble for me etc, which then sends me on a major guilt trip of course.
 

yak55

Registered User
Jun 15, 2015
616
Sure it is not just me! Some days I just get so fed up with things and go into a sort of shut down. My husband is not bothered, quite happy to do whatever I want whether this is hiking a mountain or sitting in bed all day watching a box set! ( not that we actually hike up many mountains...)
It's the school holidays ( yes I am a teacher) so the normal first week has just gone and I don't think I achieved anything, went along to one of his clubs and got tearful with friends that are keeping an eye for me. Reassured I suppose that this club is still one he is managing whilst I am at work and that his behaviour and condition is understood and supported. ( his pants were sopping wet when he returned from the toilet and not one person uttered a word) The sympathy however just made me feel very aware of my new role as a carer however independent he seems to be from the outside world.
I have three teenagers at home at the moment and went for a walk with one of them yesterday for some fresh air, he then went on to tell me how different my husband acts when I am not there. I was made aware that he paces from the sitting room to the front door waiting for me every working day amongst other things. Each holiday I am made aware of new symptons and the progression of this disease and I think this last month I have begun to be acutely aware of its effect on our family. Anyway back to the title of the thread... I was extremely apathetic this week, sat watching tele, doing absolutely the bare minimum, this resulted in me booking four days away which we leave for tomorrow, anything to make me acknowledge that the kids need to do more than watch me mope about the house. But apathy how do I combat it? I am sure it will return!
I totally understand Laura40, before mum went into a care home all we seemed to do was watch to and eat, usually cakes and biscuits, oh and tea, then mum would nod off and so it goes on. I felt listless, had no enthusiasm to do anything, it's mind numbing isn't it
I hope you all enjoy your break away and you are doing a wonderful job xxx
 

Lynmax

Registered User
Nov 1, 2016
369
As a recently retired teacher, I know how tired and exhausted I felt after the end of a term. I often spent the first two weeks of the summer holiday doing absolutely nothing! I cannot imagine how hard it must be for you to work, dare for your husband and also have teenage children - I know I would not have coped!

A short holiday will probably do you the world of good.
 

Laura40

Registered User
Dec 10, 2017
97
England
Thanks for the words of encouragement. It's now the Xmas holidays and I am again exhausted but doing better. Had a major melt down a month back as things are progressing and I was told I should stop work! At 45 this just seems unbelievable and makes me feel extremely selfish that I am so resistant to the idea. My husband would be horrified if I'd told him what the doctor suggested. But advisers are telling me I need to be ready for this next step. This sounds so self indulgent but I just don't understand how anybody can be ready for these sort of changes. My husband's major worry is the list of foods he has been told we need to avoid. I am so happy this disease keeps so much from him it would be horrendous if he understood the changes that were really happening around him. There is nothing in my area for me as I still hang on to work and all support for carers is during working hours mon_ Fri. I know this will change when the inevitable happens and I have to give in my notice but I am hanging on for now. We are having a lovely, quiet Xmas and expecting family for the new year which will mean a house full to bursting. I think my apathy has to be addressed through as much activity as possible, for as long as possible. Any advice on how to cope with life changing so dramatically greatly appreciated.
 

canary

Registered User
Feb 25, 2014
11,592
South coast
No, you are not being selfish trying to hold on to work @Laura40 I carried on working for as long as I could (probably too long actually) as I knew our finances would take a hit and it was a relief to get away and do "normal" things.

It is possible that your apathy is due to sheer exhaustion. Could you cut down your hours and your husband go to day care on the days you are working?
 

Laura40

Registered User
Dec 10, 2017
97
England
I've been in touch with the Admiral Nurses this week as unable to answer the phone in work hours they were ready to discharge me. Anyway they were superb and have given me a lot of advice over the phone. Herbert protocol, tracking, etc I've made tons of adaptions to our home myself as the support for younger dementia caters and patient s does seem to lag behind the elderly. My husband happily goes out daily to social clubs etc, so appears very independent but this month following my mini melt down with health professionals we've now had speech and language acknowledging he is choking, etc and that he isn't safe in many areas of normal life. We have survived this far because of his ritualistic behaviour and routine. Admiral explained I needed to apply for attendance etc, as we have just lived of my wages for the last 5 years. Pride probably does not help!
 

marionq

Registered User
Apr 24, 2013
6,025
Scotland
Laura, do not give up work as this will not only affect your present finances but your future when his illness has moved him on. Start looking carefully at how your savings etc are earmarked as everything in his name will be up for grabs if he ever needs to go into care. You should have a bank account in your sole name as well as your joint account for household expenses. Anything that can go into your account should go there ASAP.

My daughter in her very early fifties goes to classes at the gym three or four times a week for yoga, etc and goes out on her bike with her son when she gets dispirited. As someone says the only answer to apathy is to attack it head on with better things.

Good wishes
 

rhubarbtree

Registered User
Jan 7, 2015
490
North West
Hi Laura, I too was a teacher and read with alarm the suggestion that you should give up work. You are too young to give up work. I would also suggest you ask to reduce your days for the next couple of years. In that way you can keep up with all the inevitable changes and be ready to go full time again later. To be honest, and from my experience only, the day time activities for PWD and carers are only time fillers and neither your husband or you will be losing out not attending them. However, you do need to attack the dreaded AA form, the money can be used to pay for day centre or home care (someone to go during the day to check all is OK).

My OH was playing golf and socialising at the golf club up until two years ago. It is shocking how quickly these skills disappear and whilst his friends were supportive at first he did become a burden to them.

I would suggest you ask everyone who might have information about day centre facilities in your area. I found a visitor from the Memory Clinic really informative and our doctors have an Older Persons Nurse (I know your husband is not in that category) and she knew all about the care homes in the area. There was a TV programme on once which covered the daily life of a man with dementia. He lived in at home with wife, children, pets. He went to a care home a couple of times a week and was happy to go. He enjoyed the peace and quiet. There are various solutions but we do have to find them especially when self funding. I have not found searching on the net gets good results. Places set up a page but it is not kept up to date.

Sorry to hear you feel apathetic, sounds more like exhaustion. Might be worth seeing doctor and getting bloods checked. My recent check revealed extremely low vitamin D - so I am hoping tablets will result in more energy.

Rather long post, but we have to keep talking and sharing. Enjoy the rest of the holiday.
 

Laura40

Registered User
Dec 10, 2017
97
England
Thanks all,
It is so good to have the opportunity to just moan and get it all out. I tend to be full steam during term time and then mentally collapse in the holidays. It is then when I have to face up to everything much more, however over the last few months things sort of came to a head where I could no longer deny the inevitable and have taken on board that I will need to do more and more at home. In my job moving to part time is really not that easy.
I work in a specialist team, there are only a few of us and we all have a lot of responsibilities, these really can't be shared out any more than they already are, people just do not have the capacity to do more. I also love my job and it has taken a lot of hard work and commitment to get to the position I am now in. I will have to find a solution at some point but for now I think I just need to put that on hold.
Sorting out possible day care opportunities seems to be the next step for my husband. I mentioned today the possibility of getting a carer to take him to his social activities and he responded really happily to that idea. I think he is absolutely aware at times of his predicament and then at other times completely oblivious. But when he is in that moment of absolute clarity we do manage to have some very useful conversations about the future. Live in the day but be prepared for the future is probably the best thing for me to focus on.I will sort out the Attendance Alowance thing over this holiday and together we are going to complete the Po A for health.
 

Hellyg

Registered User
Nov 18, 2014
82
Midlands
Hi Laura40, I was struck by your posts as I too am in my early 40’s and a have a husband with dementia. I am exhausted I think emotionally and physically from working full time and caring for him. The Christmas break is restoring me but I think once I am back at work I will slip back into my exhausted state. I too, have the work dilemma as in it has been suggested I am handling too much working full time and caring... I dread when he is not safe to be left, but likewise I am trapped as I need to work to pay the bills pay into my pension etc. Also I have done well in my career and do enjoy work but is just trying to do everything that is impacting my health. Ideally I would like to work 4 days to see if it helps me cope, but my work do not seem to look favourably on part time.

Sorry I have no advice to offer, but I was just struck by the similarities

Helen x
 

Laura40

Registered User
Dec 10, 2017
97
England
Hi Laura40, I was struck by your posts as I too am in my early 40’s and a have a husband with dementia. I am exhausted I think emotionally and physically from working full time and caring for him. The Christmas break is restoring me but I think once I am back at work I will slip back into my exhausted state. I too, have the work dilemma as in it has been suggested I am handling too much working full time and caring... I dread when he is not safe to be left, but likewise I am trapped as I need to work to pay the bills pay into my pension etc. Also I have done well in my career and do enjoy work but is just trying to do everything that is impacting my health. Ideally I would like to work 4 days to see if it helps me cope, but my work do not seem to look favourably on part time.

Sorry I have no advice to offer, but I was just struck by the similarities

Helen x
Hi, yes I imagine there are lots of us out there in similar predicaments. Sometimes it just helps to know you are not alone.
 

Baby Bunty

Registered User
Jan 24, 2018
297
Sorry i cant read and not post..my thoughts and prayers go out to you all..its hard looking after a parent but to look after husbsnd especially so young must horrific..think off everyone on this cruel journey.xxcc
 

Mousehill

Registered User
Nov 28, 2018
55
Hi Laura. I'm 47 and in a similar position as regards the day job! Last year I dropped to a 4-day week, but because of issues with the company I work for, if anything, my workload increased. Mum claims Attendance Allowance, which helps, but even though I'm not exactly a high earner, it doesn't cover the income foregone. Having said that, it does help to be paid in cash and then use this during the month for food shops, to make sure we stick to the budget. I go through periods of apathy too - although I find running really helps. At the moment (we live about a 5 minute drive from mum's house) I am doing 'up, washed and dressed' 5 mornings a week and 'bedtime' 5 evenings, along with spending 3 days a week there from morning through to after mum's evening meal and dropping in for a brew when I can on the other days. I'm lucky because my work allows me to work from home some days and I have been able to work from mum's 2 days a week and get the carers to cover the times I'm away at various sites. I know you can't do this as a teacher though!

It is exhausting and I've made the decision to give up work (sort of) Later this year, I'll be giving up the day job and taking on consultancy work at a level that is manageable and that I can fit in better around my caring. I suspect we'll be tightening our belts again, but tightening the belt isn't the same as being on the breadline and in all honesty, we've never been especially well off, so it's not like we'll miss much ;)

Only you can decide whether to give up work or not. When I made the decision to quit, it was like a massive weight had been lifted from my shoulders. I gave my firm a very long period of notice, so I could make sure they had enough time to train someone else up and I had time to adjust to the idea. I can honestly say I've no regrets.

I leave in a few months' time and yes, it will be a steep learning curve when it comes to managing freelance workload and finances, but the crux of the matter is that something has to give and work is the least important thing compared to mum's wellbeing; my health; my marriage and the extended family.
 

Laura40

Registered User
Dec 10, 2017
97
England
Thanks all for different solutions and sharing. I don't think there is any one answer as we are all so individual, but with something very much in common!
This last few weeks has particularly hit home for me. Support is starting to trickle in but as this happens the reality beckons. I think you are right mousehill something will have to give, when and what I haven't worked out yet . I think just acknowledging it is a start however.
This weekend my husband was really rude to my son for the first time. He's 15 and at first didn't understand at all what was going on, but after a talk he got it, one more sign of the progression and its impact on our family. The thing is my husband said it all with a smile...