Somebody else's glasses

hendy

Registered User
Feb 20, 2008
506
0
West Yorkshire
Hi Margarita
I've just read your reply. Many thanks for your interest. As I am rushing out with my family - I will catch up with you later.
You have asked some really important questions and I will reply with more detail when I get back - its so complicated!!
take care
hendy
 

hendy

Registered User
Feb 20, 2008
506
0
West Yorkshire
Hi margarita
Dad was diagnosed with Vas dem 5 years ago, it was as a result of a catastrophic breadkdown(stroke induced they think). He showed many symptoms of one kind and another. Four weeks later he had a brainscan which showed brain damage. I think the doctors at the time decided on Vascular Dementia because it was so sudden. The medics now think that as my dad has declined further it still is dementia( of some kind) but he is also showing lots of symptoms of Parkinsons as well. He is no longer taking medications at all. This is because he is now so sensitive to anti psychotics that they have life threatening side effects. In November he was admitted to hosp in a catatonic state when a Doctor changed his medication without checking his history -he's always had some kind of sensitivity to them but it has got much worse as time has gone on.
When the Consultant explained about Dad's present situation at the time I wasn't concerned with what kind of dementia it was ( the outcome is the same in the end) but now they are talking about Parkinons as well. So they are going to get further scans etc done and can get a more accurate picture of what's going on. That's of course if Dad will co-operate. On balance I think this is a good idea because it will affect his future care etc Also if there is anything that shows it might be a 'family' thing then we all need to know. However they might not be able to give a definate diagnosis in the end anyway. So much for the wonders of modern science!!
At the end of the day, I suppose Margarita, it is what's best for mum and dad to give them a better quality of life. Even a firm diagnosis might still not change anything.
I have read some of your posts too and I do admire the practical way you go about things and you have given a lot of support to others. You've got so much common sense. It most be so hard looking after all mum's needs in every way possible. I'm sure I would not have your patience or understanding if I were looking after Dad at home
take care
hendy
 
Last edited:

Margaret W

Registered User
Apr 28, 2007
3,720
0
North Derbyshire
Hi Carolyn, Hendy and everyone else,

I think it is important to remember that we are all different people, with different relationships with our sick family members, both before and after suffering this sad illness, and with different demands on our time. I know there are some people on this site who APPEAR to cope exceptionally well, APPEAR to know the ropes and APPEAR to have it all under control, both practically and emotionally. Perhaps one or two really do, but there isn't anyone who hasn't felt inadequate, and let's face it, it's not surprising. Here we are coping with something new, upsetting, with no sense of reason to it, certainly no cure, and no idea of how quickly the illness will progress or what worse problems will evolve.

I'm lucky compared to many. Mum still knows me, is still quite mobile, is continent, is only 15 minutes from me (and on my way to work), but I've also been through lots of the things you mention, the lost belongings (given up on the teeth, mum's forgotten she ever had any), being cold at night despite asking for a blanket, no drinking water in her room, severe skin infection (5 times), reported abuse by a care worker, no light in her toilet, no toilet seat, and for the last week no bedroom curtains (the rail fell down, no-one to repair it). And don't ask me about the hassle with the DWP!

I have a full time job, but my children are grown up, even so I am taking a year out of work to cope with everything. I have had to learn to accept that I am not superwoman and can only try my best. The same goes for everyone. We wouldn't be posting on this site if we weren't trying to do our best. And sometimes we are able to help someone in a neighbouring boat - not the same boat, ours might be a different size, shape or further along its journey.

Incidentally, my daughter is an accomplished flautist (amateur so far)- and lives in West Yorkshire!

Love to all

Margaret
 

Margarita

Registered User
Feb 17, 2006
10,824
0
london
When the Consultant explained about Dad's present situation at the time I wasn't concerned with what kind of dementia it was ( the outcome is the same in the end) but now they are talking about Parkinons as well. So they are going to get further scans etc done and can get a more accurate picture of what's going on. That's of course if Dad will co-operate. On balance I think this is a good idea because it will affect his future care etc


OIC thank - you for explaining , yes your right , as long as it give your father the best future right care that the main thing.

They is a big different from Parkinson then AZ ( also with medication ) I know they a man that live alone with a 24/ 7 care packet in place with nursing care & carers . It always amazes me when I see him getting around on his own , his only 42 years old .

he does shake a lot mind you , compared to an Old lady I new in Gibraltar who had Parkinson who never shake . she was my mother sister , sister in Law . my mother sister look after her till she pass way .

it was sad really as they both lived together till she died , then my mother sister pass away that same year .

So then Parkinson is a form of dementia ?



I just never believed that AZ was as negative as I read it was when they told me mum had it , I honestly believe they got of it all wrong as medication was working so good, that my mother had just had a mental breakdown after my father died . Must of been me that had the breakdown , or went into auto pilot because I went into some real strange denial after my father died then telling me mum had AZ , that it never full hit me till 2005 ( dad died in 02 :eek: )

Glad to read that they stop those medication that was not working for your father.
 
Last edited:

hendy

Registered User
Feb 20, 2008
506
0
West Yorkshire
Hi Margarita
Parkinsons isn't a form of Dementia, but they think Dad might have both. I dont know very much about Parkinsons. I will try to find out more if they find Dads got it.
When we receive bad news, like you did with mum after your dad died. You're right, you do go into an auto pilot to help get through it and I suppose denial is a reaction to bad news you're not ready for. But coming to terms with things takes much longer as you said Margarita. It took me ages to accept everything that's happened to Dad, Me and my family. I find that however shocking if you can accept things, its healthier for you. I reached breaking point a number of times in the last five years and thank god I had my husband and children, they were such a comfort and source of strength. I feel very fortunate.
take care
hendy
 

hendy

Registered User
Feb 20, 2008
506
0
West Yorkshire
Hi Margaret
Many thanks for your reply to the post. Very wise words indeed, I can only echo what you have said. I too have realised in the last two/three weeks that I just can't do everything. I am going to have to go back to doing supply teaching again. I suppose when we are coping well we can talk/post for England! But there are times as I mentioned in my reply to Margarita when things don't go smoothly and fighting off bouts of anxiety and depression is part of the battle as well. There are so many similarities in peoples experiences, but one thing I have learned from being on TP is just how worlds apart everybody's situations are as well.

This flute playing connection is uncanny!!Are there any more musicians on this site?
take care
hendy
 

Margarita

Registered User
Feb 17, 2006
10,824
0
london
I can play the piano , mum sent me to lesion when I was younger , now that would be very therapeutic for my stress level to start that up again gets some more lesion .

I love playing the chop sticks on the piano as it was so easy to learn :D
 

hendy

Registered User
Feb 20, 2008
506
0
West Yorkshire
Hi Margaret W
To pick up on your post again. These examples of neglect/ abuse/indifference sound horrible Margaret, did you follow any of them up with any success at all? My dad had a missing curtain in his room at NH for ages, I had mentioned it a few times but gave up. (Too busy searching for specs and fending off depression) Only when CH liaison officer came round did they do anything about it. Just what are some of these homes getting away with?
It does make you wonder
best regards
hendy

Hi margarita
have you got use of a piano to practise on?
take care
hendy
 

Christinec

Registered User
Aug 8, 2007
214
0
Hi Margaret,
I am interested to see that you are planning a year out of work. On my worst days I have wondered about just giving up work but realistically it is just not an option for us. We really would find it impossible to manage on one very noderate wage and our lifestyle at present is hardly extravagent and I do like my work.I have never not worked and now I am in my fifties. There have been a few times in my life and the last few years are among these times when I have felt work was a safe sane place to be cmpared with the rest of my life. Do not get me wrong work has its moments but they are usualy easy to resolve compared to AD problems.

....but like you now that Mum is in a home I feel that there is so much I could/should do to try to make things better for her and work certainly takes up a lot of my time. It would be lovely just to have more time to spend with her but to be honest I doubt if I would visit every day or even every second day even if I did not work.

Anyway all the best for the year out.
 

hendy

Registered User
Feb 20, 2008
506
0
West Yorkshire
Hi to all
Dad still had his own glasses on. He doesn't seem to fiddle with them at all.
A very emotional visit to see Dad yesterday. Thankfully, he wasn't feeling bad tempered. I took J. with me Dad realised who we were eventually! Armed with clean laundry, cream cakes and a new toilet bag. He was busy wandering as usual and we managed to get him to sit down in his room, James helped out quite a bit. Dad loved his eclair and also took a drink of juice, His appetite remains good. He was quite chatty although it mostly doesn't make any sense.
Explained to staff that Dad now has a large pink flowery ladies toilet bag, so that other gents on the ward won't get it in a muddle with theirs! Also its distinctive enough for staff to recognise it and it is clearly labelled. The pink toilet bag caused a debate at home. Ken thought it was just another indignity for Dad to own such a thing! I pointed out that Dad had no opinion or awareness of any personal posessions he has. As long as people leave his stuff alone thats all I'm bothered about. Surely thats not too much to ask for?
Dad wanted to go walk about so we followed him, J. held his hand chatting away, he can always find something to talk about and is never put off if Dad doesn't always makes sense. the other patients love it too when J. visits. They always chat to him. The other patients always tell me how Dads doing as well. 'He's doing a lot better today' they sometimes say. I think they feel sorry for him.
I had to sort Dads clothes out so J. kept walking with Dad, when I met up with them J. had an armful of bags of sweets that the other patients had given him and his brother, who was at home!! J. later said he wanted to give them presents as well. Why not draw them a picture or design a get well card, i suggested.

Walking past the bathroom a gentleman was waiting to go for his bath, wearing only his nappy a t-shirt and a pair of slippers. I heard J. gasp! i said don't worry J. pretend you haven't seen his pants, he doesn't realise. As we walked past the gentleman in question he said a bright cheery 'hello' and we replied hello back. J. said at least he's organised Mum, he's got everything he needs for his bath!!
Over hearing Dad talk with J., Dad said 'you're a Senior Officer now, you know' It made J. day. Dad used to be in RAF and often in conversations will make references. Ken was promoted to Squadron Leader last year!
I remember just a couple of weeks ago being told Dad had no facial expression, well yesterday when trying to chat with staff, during our visit, Dad managed just a tiny little ...smile!
Definately a visit to remember
that' all for now
hendy
 
Last edited:

Nell

Registered User
Aug 9, 2005
1,170
0
72
Australia
What a joy and a delight your James is! I smiled through the whole of your post - your Dad obviously adores having James there and so do the others! James will grow up with a greater understanding than most of the frailties of old age. This will make him a better man, IMHO. You are blessed with James - and he is blessed with you and your family! Thanks for your post.
 

hendy

Registered User
Feb 20, 2008
506
0
West Yorkshire
Hi to all reading

Chrissyann ad Nell
Many thanks for your replies, they were very touching. James and his brother Ed,have been a great source of comfort and strength for all during this episode of our lives. I have tried not to overburden James(Edward is much younger and less aware) with too much of the detail regarding Grandpa, but I have allowed him opportunities to care and to try to understand,because he does worry about Grandpa and I think this is the most practical way of coping and coming to terms with this devastating illness and its effects on Grandpa and the family. James is also aware that other people in our family have literally turned their backs on Dad, and he has questioned this. I have been careful not to express any strong opinion and emotion on this subject, although its difficult at times... I just reply "its their choice, but we couldn't do that to Grandpa can we?"
An update on Dad. Its been a difficult week. With lots of commitments and migraines throughout the week I wasn't able to visit(or post) And despite doing everything I can possibly have done I am on a big guilt trip. Dad was down to his last pair of trousers today!I managed to bring him fresh laundry just in the nick of time.
When visiting, the staff quickly scurried round to get his glasses on!! So I'm glad i have had that effect!!But had he been wearing them all week? The new shoes with velcro straps have still not turned up. Dads pink flowery toilet bag was still in evidence and still had all his stuff in- so far so good!
Dad was comfortable and calm today and when I came to say hello he thought I was his dead brother! I'm not upset about this, I just played a gentle guessing game with him and then he knew who I was eventually! Sadly had to hurry off in a rush(felt guilty again)But James and I have planned another visit for tomorrow.
bye for now
hendy
 

lesmisralbles

Account Closed
Nov 23, 2007
5,543
0
Parkinson's with Lewy Bodies

Hi Margarita
Parkinsons isn't a form of Dementia, but they think Dad might have both. I dont know very much about Parkinsons. I will try to find out more if they find Dads got it.
When we receive bad news, like you did with mum after your dad died. You're right, you do go into an auto pilot to help get through it and I suppose denial is a reaction to bad news you're not ready for. But coming to terms with things takes much longer as you said Margarita. It took me ages to accept everything that's happened to Dad, Me and my family. I find that however shocking if you can accept things, its healthier for you. I reached breaking point a number of times in the last five years and thank god I had my husband and children, they were such a comfort and source of strength. I feel very fortunate.
take care
hendy

Look up lewy Bodies/ Parkinson's - might help
Barb
 

TinaT

Registered User
Sep 27, 2006
7,097
0
Costa Blanca Spain
I also think you might care to find out a bit more about Lewy Body Disease as your description of your father's problems sounds similar to this disease. LBD affects the deep brain where movement is concerned and produces varying degrees of Parkinson symptoms, along with higher brain disease which causes the AZ symptoms. Sufferers of Lewy Body are indeed very suceptable to certain drugs which can normally be given beneficially to AZ sufferers but can be very dangerous for LBD sufferers.

So the correct diagnosis is vital!

My husband was diagnosed with LBD some time ago.

xxTinaT
 

hendy

Registered User
Feb 20, 2008
506
0
West Yorkshire
Tina
Thanks, that description does seems to ring true. I hope that an accurate new diagnosis can help my dad. He's settled at the moment, but things can get really bad and then he can only have sedation with diazepam. So basic nursing to prevent relapses in behaviour is crucial. I just hope that this is well understood by his next nursing home, beause they failed to do this at his last one.
take care
hendy
 

Margaret W

Registered User
Apr 28, 2007
3,720
0
North Derbyshire
Christine,

I am fortunate that we have both earned good salaries for the last few years and haven't lived an extravagent lifestyle, so now has come the time to use up the rainy day monies.

I'm sure I will miss work, which is why I am not leaving for good, just in case I hate being without it, but I just can't cope with mum, paperwork, the DWP, and all the rest, as well as a stressful job. It would be manageable if I could leave at 5 p.m. at forget it, but the job isn't like that, and it's not just me, it is the job. As a lecturer, if you collect in exam scripts on a Friday and they have to be marked by Monday, then they have to be marked by Monday. That means Saturday and Sunday spent marking, no choice. If you are told at short notice you are teaching Subject A on Wednesday at 10 a.m., you have to spend the previous days finding out about subject A, planning, preparing, doing handouts, exercises, and it has to be ready for Wednesday at 10 a.m. 10.15 is not good enough. I can't do that and see to mum.

So I have no choice.

Love to all

Margaret
 

feebee

Registered User
Mar 17, 2007
7
0
I read this thread with great interest and now know I'm not alone :)

My mum who has AD lost her teeth at home and must have been thrown away. She has had some money go missing at the home she is in at the moment and has been wearing other peoples clothes. I complained. At £541 pounds a week I expect better care or am I being silly??
 

hendy

Registered User
Feb 20, 2008
506
0
West Yorkshire
Hi Feebee

Everybody has a different viewpoint on this subject. You have to decide what you think is acceptable for mum. I always think about what can be done to help your loved one, somethings can't be helped, the decline carries on no matter what. However, there are things that can be 'put right' and looking after essential basic needs falls into that category. Teeth, glasses basic personal care (includiing clothes, especially shoes.) Unfortunately, this lack of care and respect for sufferers seems to be endemic in our care system. Read other posts on this site and there are numerous examples of even worse neglect, disregard and indifference. The bottom line is for me looking after Dad, is to be able to offer some kind of care, that if he were well he would do for himself. So I do get onto people and it seems to have worked, at least some of the time. It might also help other patients in a similar situation, that is, are staff now looking after patients' glasses more carefully on Dad's ward as a result of the fuss?
take care
keep getting on at them!
hendy