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Worn out

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Worn out

Post  tenzin on Mon Mar 08, 2010 8:58 pm

Completley exhausted .
My grans lived with us for 13 months now and has dementia and altzhimers plus austio arthuritus , dreadful mobility plus numerous other problems .
Im absolutley exausted right now .
Shes been in for respite twice for a total of 7 days in 13 months . We get no backing from faimly whatsoever , not even one have offered any help once , not taken her out "nothing .
Every time i take her to the doctors or hospital she picks up a virus , chest or water infection then her altzhimers MAGNIFYS . She can become lazy - aggressive and dam right rude . Her attitude is testing and im being polite .
We have 3 kids who are all still young and i currently feel shattered with everything in life .
My only family memeber who was an adult bar my wife that i could talk to was my grandfather " he was tremendous and i miss him dearly . Cause my grans dementia and aggressive mood swings over the years shes kinda put my grandfathers siblings off visiting so i get no support from them .

The social workers are 99% useless , we had one for 9 months , i spoke to her once in all that time . She then dropped us off her list and we were apparantly given a new one , wasn't informed for 3 months . Then a another and i've been trying to contact him for 3 weeks now to book respite as i have to go through social services . He hasn't contacted me once , his college informed me there snowed under and trying their best .
We have booked up our first 3 day holiday in 3 years for next month and now i can't book the respite cause this social worker hasn't got in touch .
Last monht me nan was mean't to go for a 3 day break at respite and when i got their they informed me they had sickness and diorreah . They didn't phone and let me know , so it was yet another moth that went bye without a rest ..

I feel so drained and my wife is feeling it too now .
What with the lack of help , assistance from family and social care , the constant early morning washing of bed linen , washing her , cooking cleaning , medication , watching every move as she attends the lavetry as she forgets whats shes suppose to be doing i could jump off a bridge .
We have 3 young kids and although were doing all we can to meet everyones needs , ours are being neglected at the moment and i feel like im chasing shadows ..

When me nans health is o.k , life is good as she can get to and from the toilet plus pull her pads up . Right now it's dreaful and like caring for a mentaly poorly child who forgets what you said to them 5 seconds ago ..

While i have air in me lungs i'll do all i can to keep nanny with us as she was a brialliant nan to me when i was growing up , she took care of me from a very tender age along with my granpa ..

Its just very hard right now and i thought i'd come here and get my feelings off my chest ..
Thanks guys x

tenzin

Join date : 2009-04-12

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Re: Worn out

Post  Bets on Mon Mar 08, 2010 10:14 pm

What you and your wife are doing is tremendous. that arent many that would do it. having for a while been in a similar situation i know how hard and life altering it can be.

with the social worker i'd call them everyday, maybe two or three times a day. i would annoy them into responding. dont know if that would work but you guys do deserve some respite car. sometimes the squeeky wheel gets the attention it needs. maybe you could also ask to talk to his supervisor. sounds like you would have tried all the ways that you could.

maybe it will get where you can't take care of her. then you need to let her go and visit her and keep in touch. don't feel guilty when that time comes because you have done well.

i am glad you came here to talk and maybe lighten a little of the load. keep writting it can help.
bets

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Re: Worn out

Post  psychstudent09 on Tue Mar 09, 2010 12:59 am

I'm here listening tenzin [You must be registered and logged in to see this image.]
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Re: Worn out

Post  tenzin on Tue Mar 09, 2010 8:15 pm

Thanks guys ..
Last night was a bad night , me nan had somehow fell out of her bed , she was all tucked up and cosy when we put her to bed , but at 5am she called me and was laying on the floor . I was so worried so called the emergency hospital helpline and they gave me some advice and we gave her some anti biotics , hopefully she'll pick up in the next 36 hours .

I phoned 4 numbers today and finally got through to someone who phoned me back from social services , she couldn't say too much but i could tell she was disapointed at the lack of assistance we have been given and has now moved us to a new Key worker . What a relief . She also asked me to complain to her head of care and explain how i feel and have been let down . She was a star to be honest .

Just hope me nan picks up tomorrow afternoon as the anti biotics should kick in .
I'll do all i can to keep her with us , sometimes it's so hard though and instead of treading water i feel like im starting to sink .
Shes off to respite very soon now so we will get time to re-energies and charge our minds and energy levels .

tenzin

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Re: Worn out

Post  sky on Tue Mar 09, 2010 9:20 pm

Sounds like you are having an awful time Tenzin. I am glad that you got to talk with social services today. I hope they can organise some respite for you. I know that alzheimers can be a very difficult illness to cope with as it so drastically changes the personality of those we love - and often the people who were the most kind and gentle can become aggressive - and that is hard to bear. I agree you should keep at social services for more help - don't let them forget you. I know that in many areas there are day centres where your nan could be cared for while you get some life for yourselves. Is there anything like that in your area?

I hope it helps to talk it out here. I am listening.

Sky xx [You must be registered and logged in to see this image.]


Our lives are like the course of the sun. At the darkest moment there is the promise of daylight.
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Re: Worn out

Post  Bets on Wed Mar 10, 2010 1:42 am

was glad to hear you are finally getting some attention. hopefully it will lead to some respite care.

keep talking and i will keep reading
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Re: Worn out

Post  tenzin on Wed Mar 10, 2010 5:08 pm

Thanks guys , another bad night to be honest and nans not feeling well at all . She has a water infection and the doctor has changed her antibiotics now , her kidneys are inflamed too .
Shes suppose to be going respite tomorrow as my wife is off to hospital friday , lifes tough right now . Just hope nan picks up with the new antibiotics as if shes too weak the respite won't except her and she'll have to go to hospital and won't get the same care . as you all know infections are riffe in hospitals aswell and old people often become worse if staying in .

The guy from social services that i'd been chasing for 3 weeks phoned today , firest time hes phoned me , excuse was he was doing staff training for 2 days .... Two days out of 21 , probably phoned cause he was nudged after yesterdays phone call with his supirior .

Thanks for listening it really does help . Sometimes , more recently i've felt so alone x

tenzin

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Re: Worn out

Post  sky on Wed Mar 10, 2010 6:14 pm

You're not alone here Tenzin. Take good care of YOU too.

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Re: Worn out

Post  tenzin on Thu Mar 11, 2010 9:57 pm

It may sound odd , but writing on here is like a release .

Got up this morning after having some bad dreams last night and hoped nanny was feeling better , sadly their was no improvment so i called the doctor and came home from work early . The antibiotics haven't helped at all , so we took her to Hospital at 2pm , she finaly saw a Doctor at 8.10pm ... I was so frustrated as the doctor had booked nan in for a bed at 1.15pm .
She certainly wasn't feeling any better after being left without any pain killers or medication for all that time . Had blood tests - X-Rays and an ECG , i waited with her till 8.45pm then had to come home .

Praying that she perks up tomorrow but im worried as she has picked so many infections up every time shes gone out for the past 6 months now and Hospitals can't give the Real LOVE poorly people need . They do their best but the lack of staff means it's bare minimum in my opinion .

Tomorrow is another day , my wifes off for an operation , got to sort the children out and visit nanny .
Feel so tired and my eyes are stinging , head hurts .
Can't describe how much i miss my dear grandad who passed away early last year , bar my wife i've got knowone to talk to and to be honest i try and stay strong and protect her from my own frightened feelings and sadness .

When i was leaving the hospital this evening it struck me when i see two ladys walking in smiling away with Big balloons for a new baby girl that must of been born , another elderly man was in tears like myself , not sure why as i couldn't bring myself to say anything to him , it just seemed odd that one couple were overjoyed walking into a hospital while two other people were full of sadness ...

tenzin

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Re: Worn out

Post  psychstudent09 on Fri Mar 12, 2010 6:39 am

I'm still here tenzin. I am reading your posts. I'm not sure how to respond though but I am listening and my heart goes out to you and your nan.
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Re: Worn out

Post  Bets on Fri Mar 12, 2010 6:46 am

tenzin,

hope things are better for you by the time you read this.

it sounds like you have way too much on your plate right now. be extra careful with yourself right now. you are going thru a very hard time

i am glad you get some release from writing. it is a very good thing for you to keep doing. hope your nan rallies and is out of the hospital soon.

bets

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Re: Worn out

Post  sky on Fri Mar 12, 2010 7:35 am

I am thinking of you Tenzin. I am glad you are using this space to come and talk about your difficulties.

With love

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Re: Worn out

Post  tenzin on Fri Mar 12, 2010 10:10 am

Thanks for listening all .

Its just a case of waiting for the doctors to get things sorted at the moment , i feel so helpless now , it's as if im failing her cause i can't wave a magic wand and make her better myself . I can lift her , help bath , feed her 4 meals a day and give her all the spare time i have available but can't do magic .
Arthuritus , altzimers , dementia ect ect
Feel so emotional not knowing what to do and can't seem to get enough air in me own lungs .
My dear wifes in hospital right now having a small operation . All being well she'll be able to come home tomorrow .

Why is life full of so much suffering

tenzin

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Re: Worn out

Post  ebe on Fri Mar 12, 2010 10:25 am

tenzin wrote:Thanks for listening all .

Its just a case of waiting for the doctors to get things sorted at the moment , i feel so helpless now , it's as if im failing her cause i can't wave a magic wand and make her better myself . I can lift her , help bath , feed her 4 meals a day and give her all the spare time i have available but can't do magic .
Arthuritus , altzimers , dementia ect ect
Feel so emotional not knowing what to do and can't seem to get enough air in me own lungs .
My dear wifes in hospital right now having a small operation . All being well she'll be able to come home tomorrow .

Why is life full of so much suffering

Hearing the spirit wounds being inflicted by the powerlessness you are feeling, Tenzin . . . . . . . and I hope you can continue to come here and get some help tending to them. Sounds to me that you are doing all you can, and the pain of it not be enough is excruciating . . . . . . . watching someone you love suffer so much is a horrible thing to experience, and my heart goes out to you . . . .

Hope you continue to find a bit of release here . . . . even if in the tiniest amounts . . . . .

Best wishes for a quick recovery for your wife . . . . . hope you are soon able to breathe easier . . . . . .

ebe

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Re: Worn out

Post  Wisdom on Fri Mar 12, 2010 12:40 pm

Its a terrible thing to witness and even worse to live with someone who is no longer mentally and physically capable. Lots of demands...... more than just taking care of a baby. Doesn't seem to make sense that we should be providing such a level of care to the adults in our lives. My heart goes out to you and your family. Most importantly "nan". She once had a good life.......... and now that's been reduced to the moment. She prob wouldn't like it either knowing her limitations

Why is life full of so much suffering
Your current suffering is so great that it has created its own suffering. Its own burdens. Life is full of suffering because we are human.
i say:
sit quietly
watch your feelings pass in front
or you. relinquish
control and the desire to
get caught in them. see
that nothing in life is
permanent, your
thoughts, feelings, and
perceptions all pass
before you. if anything
catches you, gently release it and
simply continue watching.

Wiz [You must be registered and logged in to see this image.]
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Re: Worn out

Post  tenzin on Fri Mar 12, 2010 4:38 pm

Some wonderful words of wisdom and I'll try and remember them when my emotions take over and feel lost and desperate Wisdom .
Reading them is like taking medicine xxx

Ebe , thanks my wifes operation was a sucsess , so thats one less worry .

I know worrying is a waste of time but it seems to slip into my head regular , sleepless nights , awful dreams and i get caught up and become obsessed with worrying , like a merry go round that i can't get off of .

Visited nan today and she has picked up , feeling a little better . This Alzimers is a crazy illness . She came off the antibiotics and has improved , doesn't make sence .
Shes still in pain with her hip and feeling weak but not talking fast now and shes making more sence .

What i have learn't from todays reading is that i must try and let go of things i can't sort out myself .

tenzin

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Re: Worn out

Post  psychstudent09 on Sun Mar 14, 2010 12:19 am

[You must be registered and logged in to see this image.] Big supportive hugs for you tenzin.
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Re: Worn out

Post  tenzin on Sun Mar 14, 2010 8:40 am

Visited nan yesterday and her attitude was awful towards us . Her choice of words towards my eldest lad was terrible .
99% of the time i'd ignore it but we went out yesterday and came back early so we could see her and she threw some vile words at my boy cause he backed me up when i asked her to sit up as she was LYING on her back eating crisps , i siad she'll get trapped wind and belly ache but her respone to my lad when he repeted in an attempt to help her was Nasty .

Dementia and Alzimers is so crewl , and i honestly feel its harder for those who care to deal with than the person who has it .

Slept bad last night but remembered the wise Wisdom words of letting thoughts pass gently , happened 30 odd times but managed to let go last night so at least i got some rest inbetween .

What i can say is that although the Health serive is magnificnet in emergency cases it fails many paitents that are suffering long term illness .
Hospice homes get huge sums to invest while day care centers get bare minimum .

tenzin

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Re: Worn out

Post  sky on Sun Mar 14, 2010 11:00 am

Hearing how painful it is when your nan is so nasty. Try to stay separate from it and not let it go in and hurt - imagine it bouncing off. It's a symptom of the terrible disease she has and it is so hard for you to watch her deteriorate in this way. It's not your fault and she is very lucky to have you.

With love and support

Sky xx [You must be registered and logged in to see this image.]


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Re: Worn out

Post  Wisdom on Sun Mar 14, 2010 1:39 pm

Where did nan live before she came to live with you?

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Re: Worn out

Post  psychstudent09 on Mon Mar 15, 2010 1:36 am

I'm still here tenzin. [You must be registered and logged in to see this image.]

Jenny
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Re: Worn out

Post  tenzin on Mon Mar 15, 2010 4:00 pm

Imagne it bouncing off , eaiser said than done Sky but i'll try and remember . My skins like a Rhino with nanny as i was brought up by her and have taken alot of sharp words from her over the years when shes lashed out . Think it was that it was directed at my son that it hurt and i took it to heart this time , also to think that we rushed back from a day out so she was not alone and thats the way she showed us her Love .

Wiz , nan lived with my granpa before she lived with us , she has spent alot of time living with us these last 5 years when grandad wasn't coping or she was very ill . She'd come and stay with us " get well then return home with grandad .
Since he passed away she's been with us ever since .

Thanks Jenny ..

Just got back from the hospital and shes not well . She doesn't seem to be getting enough fluids or nutrition and my attempt to explain this to the Staff seem to fall on deaf ears . Feel so frustrated , my wife came with me today and she was choacked up at the lack of Time paitents get in these wards .
We fed her and gave her as much fluids as possible , but the staff just don't seem cut out for Dementia paitents . How can you leave a HOT cuppa tea next to a forgetfull paitent and expect them to 1 drink it , 2 manage to do it without spilling it .
I could scream right now . Theres nothing more than i can do than get to the hospital each day , but it doesn't seem enough .
She needs drip fluids plus someone to feed her till she picks up and it's not happening .
They say they can't give her anti biotics till the ones we were giving her have left her and the virus shows itself once again .
Hospitals are suppose to be where people get better with meds , not a place where their left alone without the care they desperatly need .
Maybe im BIG on care but the care these paitents are receiving just isn't good enough .
Must try and remember to let the frustrations pass calmly as i've said and done all i can .
My sleeps dreadful and i keep dreaming of my old granpa , it's as if hes joining me for short periods whilst im asleep , when i wake i feel scared again of not being able to wave a Magic wand
The truth is im scared

tenzin

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Re: Worn out

Post  Bets on Mon Mar 15, 2010 4:21 pm

[You must be registered and logged in to see this image.] tenzin,

it is so scary when you have no control over what is going on. i am sorry your nan is worse. do they talk about when she might be able to go home with you? maybe you should talk to some higher authority and complain about the care she is getting. when patients have devoted care givers that are with them it can kind of scare staff into providing better services.

thanks for giving us the update. try not to be hard on yourself over this. you cant help she has to be there and it doesnt do any good for you to beat yourself up over when you have no control. your plate is too full already.

my heart goes out to you and all you and your family are going through. you are truly a good person.
bets

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Re: Worn out

Post  tenzin on Mon Mar 15, 2010 6:32 pm

Thanks Bets

Can't relax at all , keep thinking everything over and over again , all boils down to the Care staff at the Hospital helping Nan right now .
I half want to drive back up there but it's another hour and a half trip and i have a young family who need me here too , can't neglect them it's just not fair .
Tomorrow im going to try and find a doctor to speak to Yet again , already spoke to 2 on Thursday and Friday , both gave different views , its as if there so Blazzahee about paitents who have Dementia , they clearly get hardened to it all . The fact is people should at least deserve a right to be given the best of care our society can offer whilst there alive .
As for nan coming home , it's not looking lightly soon as shes not improved at all . Dehydration is a very serious issue with Alzhimers and Dementia , infact it's dangerous for anyone let alone a poorly person . I thought she'd only be in for 3-4 days MAX , it's 5 days today and shes not improving .

Feel like im chasing shadows now .

tenzin

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Re: Worn out

Post  Wisdom on Tue Mar 16, 2010 1:10 am

Do you live in the USA?
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Re: Worn out

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