so much to look forward to when we get old !!!!!!!!!!!!!!!
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!
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
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!)
Only just saw this post, Julie. My condolences to you. I, too, would have felt death was a 'release', as no doubt I will as & when my Mother passes away. I guess there are different stages of grief: grief for fact he was no longer 'the person' you knew; then the following grief you feel after his actual passing. I do know that some people can get help from 'grief counselling', if it is available. If you feel/felt you needed this - and you could 'further down the line' too - best thing is to either ask at your G.P. or contact your local Age UK. R.I.P. to your dear Dad x
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,
And Dawnregina - on a 'lighter note' (we all need these!) 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'!
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
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?!
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
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.
Hi, Julie your letter may me cry because I feel exactly as you describe. My mum was having memory lapses etc. then in the last 3 months she declined dramatically. My mum always seemed so young to me. My dad was 8 years older and she had me at 21 so I just never imagined this happening to her. I think of the times I took her for granted and I am ashamed. She was always there for me. But was I always there for her? I guess I was. We never fought much and family our family was very important to her. She is Scottish and very sweet, kind and a real helper to other people. It makes me so sad as she has very little friends to rally around her. Just the family which is just me and my brother who has done so much for my mum. My mum fell 3 weeks ago, she had a UTI and we had no idea. I had actually had her at the doctor the day before, since then I'm lke you I feel everything your feeling. I have has Seasonal Affective Disorder since I was 19 so this is nothing new for me. My son also has anxiety and depression, he moved home 7 months ago and my husband and I are trying to get him the proper help he needs. I can help myself because I know how to. I've tried to help my son with techniques to help him. But with my mum I just feel lost and helpless. Sometimes I even get impatient and frustrated as to why she can't help herself. This is a very hard illness to understand and cope with. But you must remember one important thing. Take care of yourself, take care of your depression as best you can. Because you can't help your loved ones if you are ill. I haven't been taking care of myself and I have to start right away or I will end up in a mess. So I must get back on to a routine to make myself stronger physically and mentally no matter how fatigued I am. And I am very tired. Tired of trying to cope with all these sad things that are happening. My dad passed away 17 years ago from a long bout of cancer. I know he would want me to be strong for my mum and brother and son. So that's what I have to do. That's what I need to do, so I don't felt guilty so they can rely on me when they have to. You will get through this and life will go on. Please look after yourself it's so important. God Bless all of you coping with this dreadful disease. My thoughts are with you. Sincerely Sandi
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
Hi Julie
You are totally right, but what you have to do is to enjoy your life. How ???
If you're worried about your father and his health so try to be with him, try to spend time with him
Maybe he can't remember you but he can feel being with his lovely daughter.
Fellings never get forgotten, names may be ...
if you buy something for him and go visit him frequently, make sure it will be a lot better.
Let him believe there are someone who loves him.
Regards
My mum has severe cognitive impairment i.e. Dementia in some form it came on very suddenly now she is in a nursing home - my dad passed suddenly 18months ago she never really functioned without him as he was her carer - it has been a rollercoaster three years - I live 150 miles from mum's home so cannot visit very often it is very hard d but I tell myself "that's life" and I know a lot of people suffer with one thing or another - keep strong and philosophical- the end comes to us all eventually it's just the way life is - make the most of the little things In life that bring you happiness - remember the love you have for your much-loved parent never goes away - that is what is important