How should I be feeling?

Posted , 19 users are following.

My lovely Dad is 88 years old and for the past 3 years has been suffering from dementia. My Mum is 85 and has finally admitted that she cannot cope with Dad anymore and with the help of my family (I am one of 3 sisters) made the heartbreaking decision to have him placed in a care home where his needs are met. I don't know whether he still knows who we are but his face lights up when we visit so he clearly knows that we are somebody meaningful to him.

Dad has his ups and downs and recently he has shown signs of distress and deterioration and often cries when we visit, especially when we leave him. His life is just an existence now and though we believe he is NOT in pain physically, the mental pain is clear to see. He is confused, often angry and upset and I just want to scoop him up and take him home even though I know I cant. He is incontinent, fragile and has a lack of coordination and often cannot feed himself.

I know I have lost the Dad I once knew and I know it is just a matter of time before he passes away. This has been the case for some time and I feel a massive part of my life has been placed on hold. I have turned down job applications and invitations from friends just in case I am "needed" by my family. I know that he will never get better and there is a part of me that actually wishes he would pass away so he can be at peace and we can all grieve and then move on.This however, makes it sound like I want him to die - which of course I most certainly do not! I love my Dad and want what's best for him. I cry constantly at the situation, yet I cannot grieve for somebody who has not yet died.

I get very upset when I see him and it looks as though my Dad has been institutionalized, along with the other residents. I don't really want to see him anymore but if I don't go, I'll feel as though I have abandoned him and I may face backlash from my family. Dad and I have always been close and I love him and to see him this way is intolerable. He loved and protected me all my life and now I feel useless as I cant do anything to make him better. I am now suffering from depression.

Has anybody else felt this way?

8 likes, 34 replies

34 Replies

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  • Posted

    So Sorry to hear this, is more common than peole realise Senile Dementia....I worked in Geriatric Care in the 1980's as a Young Nurse just retired in 2009  Community Staff Nurse, Geriatric care was designed from Rehab to Terminal..now Care Homes are not reallly suitable places for people who suffer Dementia and Elderly conditions of which there are many.. The new Private Care Homes, Care homes which are little more than Nanny Homes charge highly inflated Prices and charge you if you have a property and this bites into the assest old people have worked for all thier lives paying thier Taxes.. If I was one of three sister I would care for my Dad at home syncronizing the care between the Sisters and support Medically from the GP..Old people want thier Families and I feel sad for your Dad as the care he will be getting is less than he deserves.. He will only remember things from the Past.. Take in Old Photoes of when he was young and is Wedding Photos,pictures of you and your sisters when young at school ..you'll see him light up. There should be an ability to organize care at Home if discussed between yourselves.. Full time work is No excuse, for the care and love of your parent.. he will die soon enough, for this time give the Poor MAN all the time you have got. I lost my Dad when I was 14..my Mum when I was 40 she was 67.. so had they been around today ..I would have cared for them myself with back up support from the GP & Nursing Services. The more of you there is the better to help..make your Dad loved and not cared for by strangers, Sometimes it is necessary to be admitted but for respite not for Good.
    • Posted

      Hi could you tell me HOW i would pay my mortgage & bills if i did not work full time im not using it as an excuse not to look after my father but its a necesscity i spend all my free time with him he is in hospital at the minute but they are wanting to send him home where he is not safe i cannot give up my job as i said its a necesscity not an excuse so what would you suggest as he has no other family he is not safe to be left alone
    • Posted

      Not your Fault just putting it in my perspective as someone who never had to look after my parents and would have.  ..its the Government ..they should never have closed all the Elderly (Geriatric Hospital's)  Not shoving them in a care home where the staff are undertrained to care in them.  Geriatric's Hospitals who would have rehabilitated your Dad in the past ready for home or a carehome or as a terminal patient. If you cared for him yourself which is no easy task you could get attendance allowance. But this would only be whilst he is with us in his last days.. You need support from your GP and Nursing Staff. Sadly today people (NHS) dont care much they HAVE LAID IT AT THE DOOR OF THE Families..how times have changed. Normally it's left to the daughter's which again is unfair who take the brunt of the caring... I have worked in it as a professional most of my career as a RGN so I understand it is hard work. Now retired through injury with a permanent industrial injury to my back..
    • Posted

      i also work for the nhs & i agree the care has gone its now about making a profit more than caring for the sick im gearing up for a dst on Tuesday where i will be allowed to air my views but i know its a no win situation i just want him to be cared for & safe but i also have to consider my own children & financial implications attendance allowance is a pitance so that is not an option i would still have to work
    • Posted

      When last I recall from working with Age UK, what the carer can get is 'Carers' Allowance - but that is applicable if he/she is caring for the relative 35 hours per week.   You can't get the money if you're over retirement age!   Dreadful - this Government!  I, too, have a 'nurse friend' - RGN I think.   She will talk with me when she feels that I want to.  Had had a very hard time herself coping alone with both her late Mum & then her Dad - on top of working what seem to be 'longer & longer' shifts herself!   I get her out when I can: dancing events etc. so she gets bit of a break - can't at present go away & leave her dog.  So sorry (& not entirely surprised), DawnRegina, that you have had to retire through injury! Disgraceful!  I know another lady nurse who had been 'pushed' so hard at a local hospital, she ended up getting M.E. and had to leave!  I do hope you can manage not being at work. All best,
  • Posted

    Thats what I mean it has been laid at your Door..your Dad your Problem..it was never like that. Who needs get old in this life.. it beggers belief what we have to look fwd to. But you see if it were your children who needed a speciality care package they would get it without a second thought! Psychiatric Elderly care  (Senile Dementia) in particular is a speciality as is Geriatric care or paediatric's there has to be a system a pathway on many levels to care for us in our old age including dying in dignity should we need it and helping families at a difficult time.
    • Posted

      so much to look forward to when we get old !!!!!!!!!!!!!!!
    • Posted

      And Dawnregina - on a 'lighter note' (we all need these!biggrin) I reckon the 'Who' were right with their line in I think 'My Generation' 'I hope I die before I get old'!   Now, sadly of course 2 of them are long 'gone'!
  • Posted

    If you have your Health and your legs you are rich.. If you are reliant upon others you are doomed to a life of misery unless you are wealthy and can employ a Private Nurse and someone trustworthy..Thats getting harder by the day!
  • Posted

    Sorry for your loss Julie.

    I would like to thank everyone here for taking the time to tell their stories.

    My wife is having all these feelings due to the same situation with her father.

    He went to the emergancy room with a bleeding ulcer and after 5 blood transfusions he was stable. But because he was not able to take his medications for his heart and blood thinner..a couple days later he had a major stroke.

    He has regained alot of movement and some of his speaking ability. but is angry and get uspet because he is "bored" he was a very very active man for being almost 80 and pushed himself daily to keep moving even when his knees didn't want to work right.  So it sad to see him so helpless.

    My wife had all these same thoughts as all of you, and felt guilty for having them.

    I can let her know she is not alone and her feelings are normal.

    thanks

  • Posted

    Hi Julie, Gale and the others.  I am so glad I have found this link. Hi Julie & Gale & others reading, (sorry I am ‘long-winded!)  Not yet come to it - that Mother needs residential care.

    I do feel somewhat guilty in the sense that my Mother lives up in Cheshire, whereas I am now in Glos., now finding long-distance driving so much more difficult, being 65 myself – not getting up there as often as I ought. My sister lives a few mins. away from Mother; initially it was my Mother’s choice to move over from York as always ‘close to’ my sister, which is perfectly correct.  My sister is a very patient person; yet unsure if any of the following cld. have been foreseen at the time.  My Mother has NOT actually been diagnosed with dementia, some months ago having passed the ‘memory test’ at her GP’s surgery!!

    However, if she were tested again, I/we are sure she would be diagnosed! Still DRIVING; albeit short distance to local shops but across a busy junction!. We know the G.P. would have to inform the DVLA.  She always was ‘very good for her age’, fit, active, very intelligent – admittedly quite strongly ‘opinionated’ and on a ‘lighter note’ – a ‘force to be reckoned with’, as my Dad often found!  He was more often than not – to be found outside in his shed! ‘Anything for a peaceful life’, he would say.

    We lost my father suddenly from 2 heart attacks over 20 yrs. ago.

    A few ‘clashes’ when I was younger, sorry to say as she had (I have to say ‘had’! a domineering, very opinionated personality) You could not ‘argue’/reason with Mother (was always Mummy but some kind of family ‘joke’ stuck!) at times.  All was somewhat better physically &  mentally with Mother prior her having undergone a heart pacemaker procedure over 18 months ago; this sadly did not go well, but if she hadn’t had this, she was in danger of completely blacking out when experiencing bradycardia (v . slow heartbeat) and the fast heartbeat – with which she had been diagnosed well over 30 yrs. ago was more under control.  To treat the tachycardia (fast heartbeat) she has been prescribed various meds by her G.P. to control this. BUT she is consistently forgetting to take these!  My sister feels exhausted ‘reminding her’ then Mother gets annoyed about this!   She does have a dear pet dog who is her ‘companion’; however we don’t know how regularly she is (over) feeding the dog & dog is overweight!  A worry dog may deteriorate in health herself.  Pays for a very good ‘dog walker’ weekdays. But dog simply doesn’t get enough exercise.  If Mother tries to walk her (even when told she has ‘extra’ time from dog walker or my sister is coming to walk her), sets off with walking stick one hand; dog’s lead in other: recently ‘scraped’ her hand with gentle little dog naturally ‘pulling’.

    Following on the pacemaker procedure, at first: gradually, she deteriorated with ‘memory problems’.  (Incidentally, she had some v. bad experiences during later hospital stay & it was I ‘took up the matter’ of complaint).  

    As of last few months her deterioration has become considerably more rapid; more confusion, consistently forgetting to take her medication.  My sister, although retired, is very busy with some voluntary work she ‘needs to do’ and seems to be always having to phone/go round & check on Mother.  Mother hasn’t given me her ‘old Sunday p.m. regular phone call’ for over 18 months now.  When I phone her, particularly in the afternoon in good time before she needs to prepare meals, she rarely can remember what she has done in the morning & asks me same questions over again, not ‘taking it in’. (she is still doing her cooking, but now having ‘minor accidents’ : pans started to boil over - with my sister present, thankfully, on those occasions). Age UK did fit smoke alarms. ‘Main meal’ as always done on a Sunday; some food has left out on ‘top’ in warm weather! Rarely now manages her bath; sister assists; gets bed changed  & washing done that day - Sunday, but recently things ‘not started’. 

    I have basically ‘helped’ from a distance, so to speak, as used to work with older people myself: Age UK – 2 branches; ‘Village Agent’ – accessing help, advice, finding out ‘just about everything’ from OTs, Soc. Services, voluntary organisations & more! Lots of referring on, ‘follow ups’ etc.  Hence, here I have managed to be of some help. I also found ‘dog walker’ online. My sister was surprised once their local Age UK had visited – that Mother did get full AA rate (I must have done ‘countless’ of these forms myself for clients!).   So much many people & families just ‘don’t know you can get’! (or, not – with budget cuts). However, her local Age UK ‘best funded in the UK’!  I also feel I should be more patient than I am (have never ‘lost temper’) yet I guess this is ‘too close to home’ and Mother is not a client!  I had some previous admin. experience in health settings; hence reasonable understanding of general & also mental health issues.

    I am not able to go up & visit all that easily – my own driving has become v. ‘limited’: v. nervous, tense, (neck & back arthritis) driver.  I have pets to have looked after, but can manage a reasonable train journey.

    My sister somewhat still ‘in denial’, my daughter & I believe – but starting to admit more difficulties. By time you read this, I hopefully will have obtained from my sister keys to both her house and my Mother’s (she can no longer ‘cope’ having one of us sleep at her own house).  Worry at present: if I needed to go up there, ‘take pressure off’ my sister, or whilst my sister & partner need to be away, I couldn’t even get in to either house & not insured or confident to drive Mother’s car!  

    I had been wondering why I have been feeling depressed of late (usually quite a ‘cheerful’, sometimes outspoken & ‘fun loving’, ‘zany’ person), despite my having a milder version of Chronic Fatigue Syndrome – which ‘pushed me into retirement’’; I am able to enjoy manageable sessions of all kinds of dancing: used to teach belly dance; learning Cuban Salsa, flamenco & going to zumba gold!  My sister enjoys piano lessons, swimming – even ‘zumba’, but of late she says ‘can’t be bothered’; thankfully her older partner – 72 – is v. understanding as he had these ‘issues’ with both his own late parents; she is obviously exhausted &, despite her patient demeanour, understandably frustrated but reluctant to ask myself or my brother (who is due to retire in a month or two’s time – he is in Herts. though) to try go up ‘take over’, give her a break. I do get ‘put off’ at present by sister but will have to ‘push’ here.  My daughter & partner still in South East London, where I lived for so many years. They need to stay there for their respective jobs.  Hence we are somewhat ‘scattered’.

    At least it has only just ‘dawned on me’ why I have been feeling like I have; I am basically GRIEVING the Mother I ‘had’!  To be honest, Mother had  ALWAYS on many occasions said to all of us:

    ‘if I get like this or that, I want one of you to finish me off’!   Of course, we CAN’T, whatever we ‘believe in’, but to be honest I would actually be relieved if in, say, some months’ time, she (hopefully) passes away peacefully & quickly – with her dog being able to be found quickly as she would be ‘in a state’.  She has wrist ‘lifeline care alarm’ but, as I had so often seen on my clients visits’ – not always worn!

    To think of her ‘going on’ for several more years with her once ‘lively’ mind going/gone is still almost unthinkable. NOT what she’s wanted; a ‘shell’ of the Mother we ‘had’ to put it bluntly!  Even 2 years ago was always busy in her large garden, going to art & singing groups, helping in a charity shop! 

    Only temporary ‘relief’ I have upon writing is that I am realising that I AM, indeed, starting a grieving process and can beging to ‘flow with it’, accept it rather better, so to speak.  I’m aiming to try & get whole family to actually ‘meet up’ instead of ‘hurried phone calls’ ‘have to be quick I’m afraid’, ‘just cooking/going out’ ‘bang, crash, dogs barking’ etc. LOL – to DISCUSS thoroughly in person between us all.   If nothing terribly serious has happened that’s amusing, we can still have a little ‘chuckle’ over some of it – for now, anyway, at least.  Hope you don’t mind my ‘pouring all this out’!

    Do take care, the rest of you, & wish you all the best in difficult circumstances – some of yours more challenging than ours. (new to this site; hope posted where all can read if they wish to!)

     

     

     

    • Posted

      dear Clarie my heart goes out to you having just started this same process it is such a relief to read all these stories - i feel i am just starting at the beginning of all this - 91 year old mum gradually losing memory and living alone, she forgets how many times she phones me but sometimes it can be 8 times a day about the same thing. i have just come across Supportmatch, a charity that matches people who need some help with people who need somewhere to live and they have found a most wonderful woman who lives with Mum and looks after her in whatever way we decide is best - so its some shopping/cleaning/help with medication - 10 hours a week is the deal, and for me this means i know there is someone there keeping an eye. I fear Mum is going to get a lot worse as i can see the deterioration day by day and she is booked in with the gp for tests - its taken me a year probably to come out of denial that this was happening - but thanks, and thanks to all of you for your stories it helps to not feel alone

       

    • Posted

      Hi - I'm sorry if I didn't reply straight away!    Seems I need to re-organise my 'inboxes' on email.  I had a folder 'Patient' yet many notifications/messages keep going into my 'junk' instead!  Goodness, this is all happening with my sister at moment.   It cld. take me 4 hours or more to travel up there.   At 60+ I simply can't do a long drive; has to be trains from Cheltenham Spa to Stockport.   Like you, my sister has, until only very recently, 'come out of denial'!  Interesting to hear about 'SupportMatch'.  It wouldn't honestly suit my mother though, as she's really not used to having people she doesn't know in the house.  She is having more carers in now, yet she's never been a 'sociable' type, even to extent she almost never even had friends round for a 'cup of tea'!  Sadly, this condition does get worse and the cruel thing about it is it can kind of 'trick you' when having a 'good day' into thinking 'not so bad now'!  My sister has done this constantly & yet can almost always be sure that after a 'better' day (I can't say 'good' now!) then the next will be very bad.    Our Mother seems to keep getting seen by different G.P.s including one who said 'it won't get WORSE'! Unbelievable!!  Therefore, a couple of the GPs not too bad, but little 'person to person' in all this.    After a long wait she finally got referred to the Memory Clinic; this involved a Home Visit!!   Hardly in a hospital/medical setting!.  However, the locum consultant did put Mother through various mental tests - more than the GP does.   Apparently, typically, she did v. well!   The consultant came to the conclusion that is, therefore, unlikely to be Alzheimer's BUT must be vascular dementia.  Advised on her Vit B12 injections she's having, diet etc.   She's mainly having either 'Meals on Wheels' and/or Wilts. Farm Foods and (she is actually intolerant to many green vegetables!!) these are highly likely over-cooked - with poss. little vitamin content in it all.     NOT that any of this is the 'answer' re. her dementia!     Next we have several weeks' wait prior to having a  head scan ! We think she cld. sit still long enough to have this done.  We (including my sister!) would like to know what exactly is 'going on' in her brain; which parts of her brain have 'died' the most.   Due to her irregular heartbeat (despite having pacemaker), we are pretty sure that the blood supply has NOT got to her brain consistently - hence brain cell death - brain can not 'repair itself' at this age & stage.   She will be 93 in August this year - 2015.  She's also been having problems with either constipation (we have learnt this too can excaberbate dementia).......and to the other person mention UTI (urinary tract infection - which is NOT usually 'felt' by the patient at all!) it's common knowledge to some of us that (well, I did work for Age UK some yrs. ago) these urine infections can make the patient very much worse!  Once this is treated, then there can be some improvement; albeit temporary, bearing in mind how this condition manifests itself.     sam4627 - 'good days' are par for the course; sadly we will all find the patients get less of these.    Lately, she has had several days of having diarrhoea !  This is because she has always needed something 'gentle' to take to alleviate constipation due to adhesions caused by terrible surgeon back in the 1950s when she had had to have hysterectomy.  She always used to sprinkle some kind of senna onto her cereal for breakfast.   More breakfasts have, of course, been missed.    During past few weeks, my Mother has got completely disorientated - doesn't even recognise her own home!  She consistently has it in her mind 'I am at the coast - I am packing to go home' and IS constantly putting clothes out into piles 'ready to pack' (suitcases well out of reach in loft!)        Good to share
  • Posted

    Hi, my Grandma suffers from Alzhimers, you seem to have similar feelings to me, I often feel like I don't want to go see her - this makes me feel extremely guilty because I want to see my Grandad but Grandma has quite advanced Alzhimers I think. It is completely normal to have feelings like you want them to pass on and you don't want to or are afraid to see your relative. I also feel helpless because Grandad shouts sometimes out of stress and Grandma doesn't really know who I am. It is good that your Dad knows that you are someone memorable, try showing him photos and telling him who it is, this may not help much but you will get time together. I have a question if anyone can answer this, my Grandma had a day where she could do anything without help, she never finishes her cup of tea on a morning yet she finished it and went to get another one by herself. Of course my Grandad asked what she was doing, she stayed up late aswell! Honestly it was amazing to see but the next day she was worse than ever! Anybody know what happened? Was it just a very good day?!
    • Posted

      I would also like to say sorry for your loss Julie! I'm sure your Dad would be proud. I know it has been 9 months since you posted that comment but I needed to say something 😊 Stay Strong
    • Posted

      Hi Sam,

      Yes, people with Alzheimer's do sometimes have 'very good days'. My mum died last year aged 94 after a long struggle with Alzheimer's. She had occasional very good days until a few months before she died.

      Cherish the memories of those days. It is how she would wish to be remembered.

      Andy.

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