Dementia

[2010aQuintessentialOdyssey]

It looks like my mums Dementia is progressing really rapidly.

For those who has no knowledge of me and my family: My father is paralyzed and in a wheelchair after a stroke 8 years ago. My mum has incurable cancer, high bloodpressure, and various other ailments. She is my fathers carer.

This automn her memory has gone from bad to worse, and she seems to be now unable to plan meals and shopping, she is losing track of time, dates, what is going to happen when and where, she is losing the ability to handle money, as she cannot count out the correct money anymore. She can remember that something has happened, but not the participants in the scenario, but sometimes everything will be forgotten, and she has no recollection of phonecalls, people dropping by, etc. She is also mixing up medication.

Everyday I am getting incredible phonecalls, with the strangest content. Today she phoned and asked whether I had locked myself into their house while they were asleep and put a glass containing water and raisins for my father to drink next to him, as she cannot imagine that SHE has done such a strange thing, so it must be me.

On an emotional level, I just have to deal with it. But practically? What steps do I make?

Q bumping for you, I am very sorry.

You need an urgent referral to a psychogeriatrician - don't be fobbed off with a general geriatrician.

They'll give her a diagnosis, and recommend a plan. She'll be assigned a social worker.

Sadly, I would predict that they'll recommend a nursing home for both of your parents.

I would say the first thing you need to arrange is an assessment from the social services.

Hopefully they can come and meet your parents and decide what needs to be in place if they need assistance.

It helps (I found) to sometimes have that person on the end of the phone who I could talk to and inform of ever-changing situations in my parents home.

My mum had end stage liver disease and dad cirrhosis. Just before mum was admitted to hospital and subsequently died, dad also deteriorated and went in hospital for 4 months.

It really was dire at times, with confusion, incontience etc.

Keep strong, keep eating etc. And don't feel guilty if sometimes you can't face it all.
Love to you. x

I have spoken to the family doctor today. I have spoken to the manager of the home nurse center which comes in and helps get my father out of bed every morning, and also assist him when he is poorly. So they are aware of the situation so that if a situation develops regards my fathers healt and care, they know they cant rely on mum to be able to handle it. For my mum to also get help from them, they need a referral from the GP. They cannot act without either the GP or my parents should ask for more involvement from them.

The gp said he cannot do anything without my mum on board and willingly getting a diagnose, by letting the geriatic psychiatrist assess her. The northpole will turn into a flowery meadow before that happens, I can tell you! She is so in denial. My father too, to an extent. He wants to protect her, and to keep living at home.

My only progress has been in getting them to agree to give me power of attorney, so I can deal with their affairs on their behalf, and have access to their bank accounts. I guess that is something. I can ensure that their bills get paid and that their tax affairs are in order. I have also contacted the family lawer asking for advice regards to generally being able to act on their behalf. I cant even call the hospital and enquire about an upcoming OP my mum is due to have, as I have no "right" to do so.

I feel I am banging my head against the wall.

Really sorry 2010aQuintessential...this happened to my mum who sadly died 2 years ago. She had lots of srokes which took her memory away and she didnt know if she had eaten,dint know who people were,couldnt remember going to the shops and then the final straw was at the shops when she didnt know how to get home. I subsequently found littlw notes in her drawers which said things like....feel funny,head feels muzzy,keep forgetting things,must remmeber daughters phone number.really scared.

You need to get the power of attourney sorted ASAP and have it as an enduring power of attourney.Do it whilst mum has enough willingness to let you and for her to be compis mentis enough in front of the solicitor otherwise it will be a very protracted business.If the solicitor feeld that her alzeihmers is too far gone it will take a long time to get it.Get solicitor to make about 6 copies of POA,as you will need them for banks ,insurance companies,Inland revenue,pension etc and it costs less to do it all in one go.

Keep a record of all outgoings and incomings in case she has to go in a home as the authorities are allowed to go back 7 years into her financial accounts....and assessors will check everything with a fine toothcomb

Sorry to hear about your situation 2010aQuintessential.
The nurses caring for your father won?t be able to offer much in the way of help I?m afraid because their primary role is to provide whatever nursing care he needs. It?s daft because essentially, what?s going on with your Mum directly affects your father as well.

The only advice I can give you is to contact Social Services and ask that they visit and complete as assessment with your Mum. They may well want to involve other professionals and possibly request mental health / cognitive ability tests to determine the extent of her memory difficulties.

I'm very sorry. My mil is just now undergoing tests for things similar and the same as what alypaly posted. I am quite concerned, it is so unlike her.
Best of luck to you and your family.

Your GP isn't telling you quite the whole story when he says he can't do anything without your mum's cooperation - if your mum has reached the point where she is a danger to herself or others, then you could go down the route of having her sectioned - detained under the mental health act. I know this sounds like a terrible thing to have to do, but it allows her to be taken into a home where she can be looked after and protected from the effects of her condition. It's not much publicised, but quite a proportion of elderly psycho-geriatric patients have actually been sectioned, when it's not been possible to get them to go into a home voluntarily and they are just no longer safe to be in their own home even with help.

Gp's and social services have a 'duty of care'. If you report that as a rsul of her memory loss ,it is possible she may leave the cooker on or the door open for intruders...they will have to get involved pretty quickly otherwise they can be reported for neglect.She doesnt even have to be detained.If she is going to stay at home it might be wise to have one of those combination locks on her front door so that only friends know how to get in with the code.
I looked after my mum 24/7 for 7-8 months before i finally cracked. I was a sp with 2 young boys and a job...a parent with very little memory, doubly incontinent at times(hospital didnt let me know when they discharged her). Iwas up at least 2 times a night to get her to the loo because she couldnt find it,showering her down because of incontinence.
Eventually my best friend told me to look for a home as i was heading for a breakdown with the stress and lack of sleep.She was not aggressive as some get with alzeihmers...hers was classed as a degenerative brain disease(so sad to watch them deteriorate) It took 5 years of strokes ad 4 stone weight loss before she gave up fighting and she was polite and gracious to the end,and thankfully recognised me all the way through, but ofen forgot that i went to see her daily.

Try and remember one thing,that the mum that you se now(warts an all) is not the mum you used to know as i know some can becaome very very aggressive...its not their fault,its the disease.

alypaly, I am interested in how the strokes your mum suffered progressed her memory loss.

My mum had a stroke before Christmas which only affected her language - she has difficulties with word retrieval, personal pronouns, word order, etc. I am worried that it is the start of dementia.

How did your mum's strokes affect her initially? Was she put on meds but they didn't stop the strokes?

I was going to suggest the power of attorney thing, as sadly it will probably matter at some point. Not a fix this, but I've found reading a book by Oliver James 'Contented Dementia' really, really helpful in terms of how to speak to/ manage my mother. It explains how it is for the person with dementia and how to keep them as happy and positive as possible.

i think my mum was having very mild ischaemic episodes long before the first obvious stroke. Her memory had started to get a bit poor but we just put that down to the fact that she was 85. I was away skiing and came home to find that she had been admitted to a geriatric ward with a stroke. ( a bleed in the brain)After a CT scan we found out she had got 6 old bleeds in the brain. I believe its due to the thinning of the blood vessels. That awful thing called AGE
When i walked in the ward she hardly knew me and she looked dreadful.
She was incontinent, as the stroke had affected the nerve impulses to her bowel and bladder. Thankfully it hadnt affected any of her limbs or speech. She stayed there nearly 3 months and then i said i would look after her at my home.
Gradually little snippets of her memory started to come back,but it was her long term memory and nothing of the short term at all. (if i walked out of the room, she would forget that i had been there a few minutes previous) It was awful, because she would inadvertently say...'oh i havent seen you for ages' and it was literally 2 minutes since.

My mums stroke caused her to fal in a supermarket....and each time she had a troke she would fall or even momentarily pass out. It frightened me to death as she used to fall like a tonne of bricks on the floor.

Your mum's sounds like a different stroke rather than a degenerative brain disease.
Give her chance to recover and take lots of photos in from way back and talk through them with her.

Treat her like a baby/child....she is regressing back to a childhood state and now its your turn to look after her. try not to get impatient with her...its not her fault. Dont hide your tears from her either,they respond to all emotions.

A one point my mum introduced me as her mum. Her brain seemed to have periods of repair and then degeneration,but she always managed a smile.
If you want anymore help or info just ask

I'm also worried that the gp may be fobbing you off a bit here. Have they actually tried to discuss this with your mum? As someone else said, they do have a 'duty of care'.

Could you get social work to come on the basis of reassesing your father's care, as a way in for them to also assess your mother's needs, and then use their powers of persuasion with your mum to increase the care coming in?

It's very common for people with dementia to lack insight/be in denial and services still need to try to respond. I'm not saying it's easy but I think both gp and social work have a duty to try ways and means of getting her to engage with them. Especially if she unfortunately deteriorates any further. They should be trying to avoid it getting to the stage of her putting herself or anyone else at risk.

You have my utmost sympathy, went through this with my Mother although it only really came to light once my Father died.

You need to get a Social Services assessment asap, whatever it takes. GP says he won't act without her agreement, I must say it reaches the point where you almost have to trick/coerce your Mum in to a GP appt with you present and push the issue.

I'm glad you have sorted out power of attorney, it's essential, you need to get control of all the household bills asap.

Thanks for all your input guys.
It was a bit of a step back today, as my parents have decided I dont need power of attorney, I just need mandate to manage their bank accounts. It is a small step, but hey, it is a step.

I have written to the family lawyer for advice, he has been dealing with my familys affairs for two decades, since my father was a business man and fighting many a legal battle. We have a good rappor as I had to be present in court on my fathers behalf this spring, so I am hoping he can advice me sensibly and delicatly.

The doctor has also been our family doctor since I was a child, so nearly 30 years. I think he too will have a hard time accepting that it has come to this for my family, as I were in and out of his home as a child, as his kids were in my class in school. My mother can be very coherent and sensible when talking to her. It is still possible to have long and interesting discussions, and get advice about life, the kids, everything. So far it is her forgetfulness, and her tendency of mixing up stuff which is problematic.

My father seems to be of the opinion that he can help look after her and assist her in all her daily duties. Well, as far as that goes, for a man in a wheelchair. He has problems with his short term memory after his rather massive stroke. But he is still very capable, using the internet, reads a lot, and luckily with a sharp mind. He loves my mum very much, and I think he cannot bear to upset her, so will brush things under the carpet.

It must be awful, to know you are very old, and shall soon die, that you live on borrowed time in your home. My mum is not ready to be old. Far from it. When my father had his stroke she was ready to start enjoying their retirement together. Instead she became a full time carer of a paralyzed man. I think she has spent the last 8 years thinking it will get better and she will start enjoying her retirement!

Thanks for the book recommendation. I will read it. I dont wont either of them to be frustrated and sad at this stage of their lives.

Thanks so much, alypaly. It must have been awful for you.

Luckily my mum's memory seems OKish - it's just remembering words, really. Fingers crossed!

bigtilly have they recommended a speech therapist to help her soon. If not take some large pribt books to her and try and get her to read them to you. Help her form her vowels as you would with a youngster and tongue movements to sides and roof of mouth.
Is she frustrated with whats happened or doesnt she inderstand at the moment.

Honestly, from what you have described...i feel she will improve over time.

QS, I think all the things you have described are pretty much par for the course, unfortunately... I have an elderly relative who is most likely also suffering from dementia. She has no immediate family and no relatives living nearby. Her GP seemed surprised when I phoned her voicing my concerns - my relative can also put on a good show when she tries! And is most probably in denial. I know the GP has done some sort of assessment recently but I have no idea what the outcome was. I know doctor/patient confidentiality is important but it is frustrating for the family when we just want to make sure she is safe.

I think my relative is still ok to live on her own for now (there is a warden on hand to keep an eye on things) but it is hard when family and friends are not able to pop in even on a weekly basis to check up on her. Dread to think what will happen when/if she deteriorates.

Tilly I am sorry to hear about your mums stroke. When my dad had his stroke 8 years ago, his speach was also affected. This was in part due to the paralyzis of his throat, tongue, so it was difficutl to form the words. It improved with time. Now it is only when he ill, or very tired, that his speach is a little slurred and blurry on the wovels.

DecorHate (you sound familiar, so I wonder who you were. ) I think it will be a long process, I am seing my parents tonight, as I am sorting out some new method of drying laundry, which does not involve my mum climbing up on a tall wooden structure to hang the clothes on washing lines under the ceiling.... One battle won! It is good that I can pop by a few times per week, and do their grocery shopping. I should maybe enquire with the local shops if they can deliver.

No advice really, other than that you have already recieved. Its fucking grim and i am so sorry you are going through this.

Are you in the UK?

Try contacting the alzheimer's association, even if it isn't alzheimers per se, they help with all sorts of dementia issues.

Its very worrying about the medication, definately get some advice on that - you can buy those tablet packs where you can organise the tablets a week in advance - maybe you could do that for your mum and dad then they don't have to worry about whats what, but be warned, your mum might struggle with this too.

So very sad for you

Thanks Lem, I am in Norway. I realized what was slowly rearing its ugly head at Christmas holiday at my parents' 3 years ago, while we were still in London. This is why we moved back here, to be nearby. You are right it is grim. But it is part of life, and I guess this is one of the things most of us will at some point experience. Age. Our own, and that of our parents.

There is a support group for relatives of Dementia sufferers, first meeting at the end of january. There are councellors and nurses present, so hopefully plenty of advice what to do on a practical level.

I am just hoping I wont start crying.
It was blardy hard keeping a straight face at my first meeting with the dementia councellor one on one back in November. Sympathy is a killer, isnt it. You cant keep your mask when faced with a sympathetic face.

Just wanted to add some support. My mum has what we suspect to be vascular dementia - she has particular problems with word retrieval, but has also had personality changes (not for the better). It's really hard as her mother had dementia, and she frequently says that she'd kill herself if she did. Since she is on morphine to control pain, and both her and dad inject insulin, it would be far too easy to do so

CMO

You know what Quint, it is OK to cry - but it doesn't come that easy to me either. Wishing you strength xx

QS, I was probably GrapefruitMoon for the longest time, had a few other names before and since!

sorry to hear that CMO.
DecorHate that would explain why I "recognized" you.

I think we have had a small breakthrough today. My father has been working on my mother, and explained to her that nobody wants to paint her situation black, and she does not have to hide how things are, we are on her side and are only trying to HELP her. She has agreed to go with me to our gp and talk about her situation, and get an assessment at the geriatric department. My father said "what if it turns out to be a medicine you can take, but you wont get it, because you are too scared of the diagnosis?"
I am so thankful that my father is so full of love for mum, and knows so well how to handle her, and so pleased he was able to talk to her using tact and diplomacy. She needs to know she is loved, and that all we are trying to do is help her. And to ensure that it is safe for them to live at home for as long as possible.

It is a road with many ups and downs. But the atmosphere was very good at their house, more relaxed than in a long while, possibly because the air has been cleared.