1. looviloo

    looviloo Registered User

    May 3, 2015
    463
    Female
    Cheshire
    When dad went into hospital after his fall, and then into a care home, several friends suggested I'd 'feel better' now that he was being looked after by someone else. So why do I feel more tired than ever? It's been 4 months since his fall and I feel like I've been chasing my tail ever since.

    I've taken over his finances, worry about his empty house, deal with all the paperwork, visit as much as I can (an hour each way)... and still have my own family to look after. His going into a home hasn't made me feel better in the slightest, so maybe I'm doing something wrong?!

    Today I thought I'd have a day out with my daughter (she's on school holidays) but I'm just so jiggered that we made it to the supermarket and back and that's been it. I've had three phone-calls today that relate to dad (department of work and pensions twice and one from the care home). I have appointments to attend this week and next with dad's mental health nurse, his doctor and the DWP again. It takes a lot of self discipline not to go off on a rant when anyone tells me that my life must be getting easier now!

    I'm starting to feel a certain amount of hysteria setting in :D
     
  2. Lancshiker

    Lancshiker Registered User

    Apr 17, 2013
    87
    Hi

    Hi looviloo

    You're tired because you're worried and the location of your loved one doesn't change that.

    My Dad had Alzheimer's and I never looked after him myself but my best friend found a nursing home for her mum (her father died quite young) and after feeling worried and guilty, all of which is completely understandable she finally realised the unthinkable. That the nursing home took care of all of the crisis stuff leaving her to spend quality time with her mum.

    I haven't been in your position but maybe take it in stages. Firstly thinking about some unannounced visits to your dad, are you happy with his care. My dad would never eat if he was unhappy so that was one gauge. Secondly, you might want to rent you father's house out or sell it and keep the funds aside for his care, if applicable. That might take a worry off your shoulders if you think he'll stay in the home for a while. My friend let her mums house out for a year and then sold it when it became clear she wasn't returning.

    It's easy for people to say it should be easier for you now because they're looking at it without the emotional turmoil you're going through now. It's so easy for me and others to say but if you can find space to make a couple of big decisions, then you can start to reap the benefits.

    Remember, wherever your Dad is, he's still your Dad and you love him no matter what.

    Best wishes

    Liz
     
  3. looviloo

    looviloo Registered User

    May 3, 2015
    463
    Female
    Cheshire
    #3 looviloo, Aug 26, 2015
    Last edited: Aug 26, 2015
    Thank you Liz, you're totally right... the worry is still there no matter where dad is living. I hope I can get to the realisation that your friend had, sometime soon. I do try to take things one step at a time, but some days are just more difficult than others. I hope I don't come across as feeling sorry for myself! I know a lot of people here are in a similar position, and I appreciate being able to write it down knowing that you understand.

    Of course, the friends who say this to me are well-intentioned, it's just that they have little or no experience of it themselves, especially the dementia aspect of it all.

    There are some big decisions to make, as you say, and hopefully I'll feel easier about everything once those are made. The tablets I take (tamoxifen) don't help - they can cause fatigue and anxiety. I tried to book myself in with my doctor recently, just to talk things over, but her first available appointment is late September!

    Mind you, just getting a good night's sleep would help a lot!
     
  4. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,088
    Yorkshire
    Oh Looviloo I sympathise
    I've just woken up from a nap this afternoon (I don't normally nap) because I felt so tired and down and just wanted to switch off.
    My dad too has been in his care home about 4 months and I have days when I just want to rest and let the world carry on a while without me.
    I've cleared his house (almost) and seen to his bills and sorted out all the paperwork/meetings for his care etc .... and he's on a bit of a downturn so there's that to get my head around
    and of course I visit
    and am trying to 'get a life' for myself ....

    I've put the tiredness down to change - it's always tiring, even when it's for the better overall, and certainly necessary.
    And grieving - after all the need for a care home is a significant signal that the dementia is progressing and no-one really wants to have that 'in your face' (well I don't) yet it has to be faced and that saps energy.
    And visiting - I realise how much of my time with dad I used to fill with chores, which covered over the cracks in the lack of ability to chat and be how we were before - so in some ways visits make me feel redundant (I'm slowly helping out when I go, makes me feel more part of his new home) and I'm having to find a new way to be with him which is comfortable for us
    And each time I feel I've found a routine, it's upset by a new phase of dad's AD so I'm not yet finding equilibrium - but it's only 4 months what do I expect?
    4 months in a new job is just about where you aren't new so are expected to get on, but you only know the surface level of the job so are still coming up against what you don't know just when you're relaxing with what you do know - which is unsettling.
    I would never have guessed that I would react like this - I was thinking I'd be sorting my life out - some volunteering and days away .... but maybe later
    So I've decided if I am tired, so be it, I will slow down as much as I can - do what needs to be done then not do whatever else until I am more with it - and anyone else will just have to accept my slowness right now
    Your friends mean well - but we are living the reality and it doesn't follow guidelines or platitudes - I fear I may have said something similar had I been in their shoes, before all this knowledge/experience - at least they are trying to support you
    I also recognise the Tamoxifen - literally 10 years since my ops - and remember how long it took to feel myself again afterwards - so just walk slowly, one step at a time, then have some rest - things will still get done
    I don't wonder if we don't need some crisp autumn air to see our breath in, and a few fallen leaves to crunch through - not that I'm wishing summer over ...
    I'm rambling so I'll stop
    but I do sympathise
     
  5. Liz57

    Liz57 Registered User

    Dec 22, 2013
    184
    Same here.

    Mum's been in the care home for nearly three months. I was practically driven to a breakdown trying to care for her and was spending up to 7 hours a day with her (not counting the phone calls when I got home) so thought when she went into the home I'd feel so much better. She's settling in well now but instead of feeling better, I'm struggling to find time to visit her as much as I feel I should, haven't yet managed to clear anything from her home, am still registering POA with utilities, pension people etc. and am under a great deal of pressure from my work to do so much more as they think I've nothing to do now! To add to the worry, she's just been diagnosed with quite advanced breast cancer!

    Caring doesn't stop because they've moved house!
     
  6. looviloo

    looviloo Registered User

    May 3, 2015
    463
    Female
    Cheshire
    Just catching up... yesterday was busy and by 9pm I was ready for bed. Still shattered this morning, and we have an evening with friends planned but I've no idea how I'll keep my eyes open!

    Shedrech - thank you, I can tell that you know exactly what I'm going through, and I wish none of us were in that position. But you're right, we have to take it as it comes, and if it comes with tiredness then so be it. If there's one thing I learned from my cancer experience, it's to be a little easier on myself so in that respect I'm probably more prepared to deal with dad's decline that I would have been a couple of years ago. The most frustrating thing about the tamoxifen, for me, is that it makes my brain extremely fuzzy and there are days I can't think straight, so sorting out all the paperwork and appointments can be slow going! I like your analogy to it being a 'new job' because that's just how it feels. The dementia demands that we learn new skills and the goalposts seems to change all the time. It's very draining. I really hope we get that bright, crisp autumn you mentioned, and that we can feel a bit more refreshed... here's hoping!

    Liz57 - sorry to hear that you're going through this too; it's not just the role-reversal, is it, but all the administration too. If you think that we're effectively taking over the running of another person's life, then it's no wonder we're over-stretched and tired. I was lucky that my dad kept his finances and so on in fairly good order, but there have been times when the slightest hiccup can push me to the edge. Registering the POA with the bank springs to mind... it didn't go smoothly. I know it might be impossible, but is there a chance to take compassionate leave from work? You sound like you need some breathing space, even if it's just a day or two. So sorry to hear your mum's got more health worries on top of everything else. Please try to look after yourself too :).

    I had a good visit with dad yesterday, although I'd been dreading it because the mental health nurse was also visiting and I'm never sure how he's going to react to visitors. The nurse was lovely though and knew just the right things to say. And she told me later that she would 'question his capacity to make decisions', which isn't a nice thing to hear about your own parent but does relieve me (a tiny bit) of some of the guilt I've been carrying around since he moved into the care home. Poor dad, he did look old yesterday, and I could tell that he was a bit bewildered when his dementia was being explained to him yet again. He has enough awareness to understand, but doesn't retain the knowledge or the reasoning. At least he was laughing though - he told me about some funny incident that happened over breakfast, and I couldn't make sense of it but it was apparently hilarious, so I laughed along! It was good to see him smile!
     
  7. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,619
    USA
    I hear you on the paperwork

    Looviloo, sorry to hear you're having such a time of it. I, too, had well meaning people tell me how much better my life would get now that my mother was in a care home. Well, yes, I was able to stop worrying about her not eating and not taking meds and burning down the building and getting in her car and killing someone, but then the paperwork started. Six months later, it's...somewhat better. It seems it will never end, and I imagine you feel the same way.

    See if any of this rings a bell for you:

    I don't want to tell you how many hours I spent at the bank trying to get the PoA sorted; that was so awful. (When my father died, I thought that was awful, but dealing with paperwork for the living-but-not-capable is...well, if not worse, then at least, takes longer.) I still can't get her financial advisor person to send mail to the correct address; they always have another form to be filled out or something. My husband and I about have her house cleaned out but now I need to get it fixed up and sold. And don't get me started on the wretched insurance agent!

    I think in some ways, the care home transition is harder, because now you are aware of all the "stuff" that needs dealing with (and in some of our cases, legally obligated to do so). Plus it is a move, like any other, and that brings its own list. And the care homes add their own pile of paperwork--I've just filled out a form, so my mum can get a flu shot (jab? immunization?), and it honestly would have been faster to go to nursing school and get certified to give her the shot myself, or at least it felt that way, and then another came in the mail this week saying they've changed their DNR policy and that's another round of emails and phone calls and paperwork and oh, you need medical alert jewelry and so forth. I am sure you know what I am saying here.

    You're so right, we have to now run someone else's life completely, but still do all the things we had to do before, plus deal with all the issues that their medical problems throw at us.

    I hope you can get some sleep, and it's probably a good idea to see friends and be social. If they are good friends, they won't mind if you fall asleep on the sofa, right?
     
  8. AndreaP

    AndreaP Registered User

    #8 AndreaP, Aug 28, 2015
    Last edited: Aug 29, 2015
    I think it might be time to visit a doctor and get checked out. You could be suffering from adrenal fatigue as a result of all the stress you've been under. Also don't be afraid to say you feel unwell and can't attend all these appointments. Nothing will happen if you don't speak to the mental health worker this week.

    I have just put mum in a home and am yet unable to face the cleaning up of her home and the disposal of her things. Getting mum into the home took it out of me and so I'm ignoring it for the time being until I have the strength to face it.

    Do what you can do comfortably and don't push yourself. Make sure you're not lacking in anything like Vitamin B 12. That can make you feel like death warmed up.

    I'm convinced it will get better. Let the calls from the CH go through to the machine. I do that when I can't face another conversation. Do what you can when you can. It's okay to say no. :)
     
  9. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,987
    Suffolk
    I think it must be very common looviloo. I also felt absolutely shattered when OH went into care home, and it seemed to get worse. I found it very difficult to let go after caring for him for 10 years or so. The battles changed, but they were still battles!
     
  10. looviloo

    looviloo Registered User

    May 3, 2015
    463
    Female
    Cheshire
    #10 looviloo, Aug 30, 2015
    Last edited: Aug 30, 2015
    Amy, your message rang a LOT of bells, yes :). I don't know what I was expecting when dad moved into care, because I just took it one step at a time, but the amount of paperwork has astonished me. The hoops I've had to jump through, just to get things done! It's as if the bureaucracy is designed to trip you up at every turn. The bank was obstructive (despite POA) and then got it all wrong by recording the wrong contact address. Plus I still don't have access to online banking despite many, many complaints. Just this morning I've sat down to fill in the attendance allowance form which the department of work and pensions (DWP) has 'kindly' sent me, and it has brought tears to my eyes, just the thought of filling all 30 pages in. Plus my arm aches anyway (lymphodema) so all that writing won't help. The appointment with the DWP is first thing Wednesday morning so I can't put it off too long....

    AndreaP, I hear you and yes, I thought a trip to the doctors might be in order, but I'm not really sure what they can do. I'm not actually working at the moment (in the conventional sense!) because of my own health issues, so they can't sign me off or anything. I'm reluctant to take anxiety tablets or anything because of the tablets I already take. What I really need is a month on a tropical island, with no phone or distraction of any kind, but I don't think they can prescribe that haha! Multivits might help though, and I guess they could check my bloods :-/. I do need to say 'no' more often and I appreciate your reminder that it's ok to do that.

    Spamar, it's a pretty rubbish journey isn't it?! Dealing with all the practical issues while also grieving for the way things were :(.

    I thought I might relax a bit this weekend, with it being a bank holiday, but my mind has other plans... am I the only one who feels overwhelmed by it all? I'm sure I'm not. I wouldn't wish it on anyone else but coming here and reading the threads does help. Hopefully my mood will pick up again soon. Dad rang me 4 times yesterday - I don't mind, but it's just another reminder of the way things are now x
     
  11. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,987
    Suffolk
    Just catching up. Loo, get ageuk or similar to fill out forms. They're experts, also do the physical filling out. They know the buzz words and get on with it. Round here, they seem to be very good.

    I remembered just after OH went into care permanently. I phoned Crossroads to tell them he wouldn't be needing their services any more as he gone into a home. She said, chattily, oh, that'll be easier for you then. I has spent the morning doing his finances. I was tired and fed up. I told her exactly what I thought about such a crass remark, and told her what I'd been doing that morning.

    Don't think she'll make that mistake again!
     
  12. Angela T

    Angela T Registered User

    Jul 13, 2014
    187
    France
    Yes, when your OH/parent goes into care, it doesn't magic away all the problems and concerns, it brings a whole new set of things to deal with...

    You are still responsible for another person - and that is a lot to deal with !
     
  13. looviloo

    looviloo Registered User

    May 3, 2015
    463
    Female
    Cheshire
    Spamar, I don't know why I've ended up with the AA forms... I rang AgeUK initially, and they took some details and said to expect a call from DWP. Three calls from DWP later, I've received the forms to fill in and an appointment to attend at dad's care home. Have to say, it has all happened very quickly. I've calmed down a bit now, and think I'll fill in what I can on the form, and the care home can help with the trickier bits. I might ring AgeUK again on Tuesday too (pity it's a bank holiday).

    Haha, I bet the person at Crossroads bit her tongue before saying anything like that again! She was no doubt well meaning, but it's SO unhelpful!

    Angela, you're right... the responsibility is still there... I have some regret about not moving dad into a care home nearer to me, because part of the problem is the distance I have to travel. He was insistent about staying near his home at the time though, and I thought I could manage the regular journeys. It's hard to think straight when you're going through a crisis!
     
  14. Angela T

    Angela T Registered User

    Jul 13, 2014
    187
    France
    My mother is in a NH 30 mins' drive away - it was better than the one nearer to me.

    I also thought I wanted her to be closer so I could visit daily and ALL my friends, doctor etc... said it is better that she is NOT too close - so that I cannot easily visit every day.

    I now realise that IS better for me - my life would be completely taken up if I went every day.

    How far are you from your father's CH ?
     
  15. looviloo

    looviloo Registered User

    May 3, 2015
    463
    Female
    Cheshire
    Hi Angela, I'm about an hour's drive away. Because of the number of appointments I've had to attend there, plus just wanting to be with dad, I've been going 2/3/4 times a week, and then to his old house too (which is 40 minutes away). It's too far for me to making the journey so frequently and I've tried cutting the number of visits to once a week (plus trips to old house) but dad just increases his number of phone-calls until I cave in! Hopefully it'll work out better in the future, especially once the house is cleared and sold. And the care home is lovely - I get on well with the staff and can call in at any time :). So there are some positives too.

    I would normally agree with your GP and friends that it's better the CH isn't TOO close, but I guess I'm just tired of all the running around I'm having to do. Sometimes I wish I couldn't drive... that would solve it haha! I'm glad you've found a CH you like at a distance that works for you :)
     
  16. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,088
    Yorkshire
    Just catching up too!
    Had a day doing my stuff yesterday - volunteering at a history event - lovely to be among people of like mind
    I don't visit every day Looviloo - and I'm only 20 mins away - dad does have someone visit each day mostly, just the odd one missed - but I couldn't cope if I went 7 days a week - so choose only the days that are good for you. I'm slowly cutting down the amount of time I stay too.
    And I am concerned about you having phone calls from your dad - mine has no phone in his room and apart from 2 times when he was really wound up has not asked the staff for a phone - and those 2 times the senior spoke to me on my next visit to put aa strategy in place so that they had something to say to him so that he wouldn't need to phone. So they are shielding me from dad's neediness and I'm very grateful they take their 'duties' so seriously. So could his access to a phone be restricted/curtailed to save your sanity and energy?
    I couldn't drive after my op - frozen shoulder! - and you must take care - so use it as a reason NOT to visit ie drive so much and for so long - it's not an excuse. it's a real concern for your health.
    Are the AA forms the initial ones - or the ones to increase to night time too? If the initial forms, you can fill in the online version, though you still need to 'type'. I still have the additional one on my table - can't face it either but have got together all my notes so shouldn't take long really.
    Glad you get on well with the staff, it gives peace of mind doesn't it!- I'm building relationships and really like them - they are happy to have a chat and not just about dad - it helps so much to feel that they are approachable and are good with dad. It's his home now so I want to feel comfortable there - but content to leave him also.
    I'm waffling - it's great that we get a chance to here on TP.
     
  17. looviloo

    looviloo Registered User

    May 3, 2015
    463
    Female
    Cheshire
    Hi Shedrech, happy to hear you had a nice day yesterday :). I need to get more involved in my own interests again, for my own sanity.

    About the phone-calls... he has a mobile (one of the big buttoned ones made for people with sight and hearing impairment) and because he's always been a gadget person, taking it away would be like cutting off his right arm. But he can't use it very well and often presses the wrong button. I'm getting better at ignoring his calls if it's at a time that doesn't suit me (he usually manages to time it to our meals!), but even seeing dad's name flash up raises my stress levels. Yes, it is neediness on dad's part, and I hoped it would decrease more by now (he was very needy just after his fall). It's great that your dad's CH is able to shield you like they do. I suppose my dad won't have the mobile forever, so I probably just need to find more coping strategies for now.

    Ouch, I'm sure a frozen shoulder was no fun! My op was over 2 years ago but it still feels like my arm etc is healing. I think it's the driving that's made it worse recently; typing on the computer is ok, but gripping a pen can set it off too.

    As for the AA forms, I assume they include the night time allowance, so maybe that's the reason I have to fill them in myself. This is our first application for attendance allowance. I've got some of the information together but I've had enough for today so I'm giving it a rest! What a palaver!
     
  18. canary

    canary Registered User

    Feb 25, 2014
    10,777
    Female
    South coast
    Hi looviloo. Like Shedrech Im concerned about the number of phone calls he is making. He needs to be able to direct his needs towards the CH staff rather than you. I know that eventually he will forget how to use the phone, but in the meantime IMO its important for him to develop bonds with the staff. Is the CH aware of the number of times he is calling you?
    Who charges up his phone when it runs out? Perhaps it might get broken ;) ? You will, of course, buy him a new one.................. tomorrow ;)
    :cool:
     
  19. looviloo

    looviloo Registered User

    May 3, 2015
    463
    Female
    Cheshire
    Thanks canary :). Some days it gets me a down a bit, but it varies a lot... I think dad just gets it into his head to call me, and then forgets he's done it and calls again, a bit like the repetitive questions? And then other days I hear nothing (which is ok by me!). Thankfully it's pay-as-you go, so I have been known to forget to top it up ;-).

    Today's been another busy and draining one - I met two people from the dept of work and pensions at the care home this morning, to go through our application for attendance allowance. It took me a fair amount of time this weekend to gather the information and fill the form in, so I'm relieved it's done.

    Then dad's GP visited in the afternoon to set out a care plan, and we (GP, dad and myself) had to discuss dad's wishes regarding 'end of life' scenarios. It was awful. The GP was lovely, but it struck me that she didn't have much experience with this kind of thing, and spoke about situations that might happen in the future... I always thought it was better to relate questions like that to past events? For example, 'if you had developed a serious chest infection last winter and had needed hospital treatment...' etc. But she phrased it all as a possible future event and although it is a completely realistic viewpoint, it made it tougher to discuss and much more emotional. Dad seemed upset (of course) but managed to make sense of it and make his wishes known. I on the other hand found it quite distressing and ended up close to tears, which I was determined not to do... I wanted to support dad, but had him patting my hand instead :-/. Oh dear. I'm glad that's over. They do review it from time to time, so nothing's set in stone, but still.... at least we're over that hurdle. Has anyone else had to do this?

    Hopefully I'll sleep well tonight, if my brain will stop whizzing round!
     
  20. Angela T

    Angela T Registered User

    Jul 13, 2014
    187
    France
    Looviloo - what a very draining day.

    Can you do something for yourself this evening ?

    I find it helps to have something to look forward to, something to break up the routine and the constant stress - we really have to take care of ourselves...

    I am drinking a LARGE glass of wine !
     

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