Advice Please

[Plum1108]

Hi

My mum was diagnosed with Dementia about 4 years ago, not long after my dad died. She is now 76. She currently lives on her own and has carers going in 4 evenings a week. She seems to get by on routine and repetition. Changes to her routine completely throw her now.

To start with, it was just her short term memory and her inability to take in new information. However, her STM has now deteriorated to about 3 minutes, less if she is agitated. She is also starting to show behaviour that is very out of character and does weird stuff like putting cooked food in the cupboard instead of the fridge. When you point this out she gets very defensive and insists she knows what she is doing. Her favourite phrase is "you all think I'm stupid" to which we reply no, we just think you have dementia! Not much of an answer....

She has had carers coming in for about the last 9 months (on your advice again!). We have had a few problems, like they are supposed to make sure she had an evening meal but she kept declining and they didn't push it. We have now said that we would rather they make her a meal and it get thrown away than risk her not having a proper meal all day (she does eat, but has developed a taste for biscuits and cakes in large quantities!)

She has also got rather paranoid about money. On one had she is happy to give out her credit card number to a man on the phone who rang up (don't worry, she doesn't actually have a credit card and gave him her Nector card number!) but is reluctant to pay for anything else and thinks we are trying to steal her money. We (my eldest sister) has POA and looks after her finances although my mum does have access to a BS account that she uses to get cash out.

Last week I had to rush over there 3 days in a row. Twice because she has lost her keys and once because she was getting these phone calls asking for money. I have had more keys cut and left a set with a neighbour. I also labelled her keys for her but when I went over there yesterday, she was out and when she cam back she had taken the wrong keys (lucky I was there). We managed to find the right keys stuffed in a cupboard but she kept saying they are not her keys. I am also in the process of changing her phone provider and telephone number to stop the scam calls.

My question is this (took a while to get there!) when social services visited and arranged for carers to go in, they also said that there was more they could do for my mum before she has to go into a home but other than have more carers go in (which I'm reluctant to do, as they don't seem to do very much when they are there), what can social services do? Mum goes out twice a week to clubs, has a cleaner every other week and a hairdresser coming in once a month. We've got a gardener starting tomorrow and coming in once a month. I'm one of 4 siblings and 3 of us live nearby and visit at least once a week each. The other tends to have mum 2 or 3 times a year for a week at a time.

Also, when do you know it is time to put your parent in a home? I know we are not there yet but I feel it is not too far away. Physically, my mum is very fit and able but if she can't remember what she was doing 2 minutes ago, is she safe on her own?

Sorry for the long post, but last week was very stressful, coupled with a demanding job and two young children, I feel like I'm letting all sides down at the moment.

Thanks for reading - all advice welcome.
Plum

 

[ellejay]

Hi Plum, Gosh your mum sounds just like mine.The panic calls 'cos she's lost her purse, sometimes "Those people" came in and took it. Usually one of the family would discover it in a drawer, but then her hiding places got more unusual and harder to find!
My hubby changed her locks upteen times as she either "lost" the keys or ruined them by trying to use the back door key for the front door (all labelled, no difference!)
Her need for people to always be there meant she would say anything to get us there,unfortunately she would forget anyone had visited as soon as they'd gone!
We had meals on wheels delivered, which she said she didn't eat,although we think she ate them if no one else was there!
She too kept Mr K in business with her liking for cake.
In the end, following a fall SS decided she needs to be in a care home. I won't say everything is rosy, but whereas before she was lonely,frightened and unsafe, now she is none of these things. Still grumpy tho'
Best wishes Lin x

 

[Cookie21]

When caring for someone with dementia... I have found I have become a detective! Go around searching for lost teeth, glasses, purse, handbag, lipstick (we are now down to one lippy, where the others have gone... no idea!) As for the teeth... one day I found 3 lots (2 bottom and 1 top set ) darent even ask on that one!

As for the key issue... can you get a keysafe fitted - an easy way of keeping a set of keys safe.

My mum frequently puts the ice cream in the cupboard... but her reply is... I am not the only one who lives here. Mum does live alone, unless someone comes in after the carer has gone and that could explain the extra half set of teeth.... hmmmm, my mind is boggling now

 

[vsb1001]

That sounds so much like Mum. She had meals on wheels, but would just eat the puddings, she seemed to live on biscuits.
After the carers, social services arranged "side by side" carers, who had a bit more time to spend with Mum. I'm not sure if all areas have them, but by the time we got to that stage, the wanting to go home thing had got so bad that Mum was leaving her home of 30 years to try and "go home" so it was time for her to go into a care home. She took a while to settle, but that is the best place for her now.

 

[lin1]

Hello Plum
I have little experience with what the SW can do as far as more help coz mum was self funding and dad an I looked after mum.

If your mum is not self funding you may like to look into direct payments , which means you are given a certain amount to employ your own carers ect . I know quite a few people on here have done this , it means you can be more flexible in arrangements and choose your carers . Its not as simple as i make it sound tho.

It may be a good idea to start looking around at care homes now , so that later on you know whats available and know which ones are unsuitable

The SW should be able to provide a list of the ones they use, but it doesnt mean they are much cop

 

[BeckyJan]

Hello,
If SS have said they could do more for your Mum, maybe you should be asking for another assessment of your Mum's needs and find out what they can offer.

Its difficult to advise when is the right time for care home. Each person's ability to cope is different and willingness to accept outside help may vary too. If your Mum is at risk or needy of more company then that could be the time for searching out care homes. Decisions of that sort can be made alongside a good Social Worker or CPN (Community Psychiatric Nurse), bearing in mind your own limitations when caring for your children. They are your priority as I am sure your Mum would say in her more healthy days.

Take care

 

[piedwarbler]

Hi, you could have been describing my mum there- the only difference being my mum was increasingly immobile with MS as well as dementia.
I think you could start looking at homes now as it will take a while. Ask around to find out where the good ones are, the best people to ask are friends & neighbours, district nurses can give you heads up if you know any, also paramedics know which homes care well. I don't set much store by CQC reports.
My mum went in a home when she came to crisis point which was when she could not get out of her chair. We found her commode unemptied by her carers. It was sad. It was about 2 years after I felt she needed to make the move. Now she is in bed 24/7 a year and a half later. Try to think of the possible future when you choose a home - my mum is in her third home now as her needs have changed.
Good luck. I am thinking of you x

 

[Plum1108]

Hi All

Thank you very much for your replies. If it's not being too selfish, it's nice to know I'm not alone!

I think you are right (Lin1), I will start looking into care homes after Easter, if just to get an idea about where she could go and how much it will cost (she is self funded).

We have tried fitting a key safe but the thing jammed and my husband had to use an angle grinder to open it! I have also become a dab hand at searching (I'd make an excellent SOCO)for stuff. You have to do away with the logical and just look everywhere and anywhere!

I pleased that we seem to be doing all the right things at the moment, I just find it all very frustrating and I feel like we are holding our breaths to a certain extent, waiting for the next phase of the illness to kick in. It's just very sad seeing my mum going from a person who was always interested in what was going on, looked after herself well and was very empathtic to being someone who is not really interested in anything at all!

Thanks again
Plum

 

[cmnotz]

Hello Plum

Apparently those who suffer from dementia frequently develop a liking for sugary foods and it is even suggested sweetening savoury foods to encourage eating ... I know that sounds like an unhealthy diet but it might make the difference between getting some nourishment rather than just carbohydrates?

Generally it is recommended not to interfere with 'bizarre' behaviours unless they pose a risk and obviously storing food inappropriately does pose a risk - possibly the only solution to that is have carers and family check the cupboards regularly but discreetly (my grandma's meals on wheels used to be put in the dirty laundry hamper, which was clearly not storage and did damage to the clothes and bedding as well)

From what you say about her existing care visits I am guessing that SS are suggesting meals service and additional care visits but they might be suggesting some telecare - the only way to find out is to ask them to tell you what additional services they think might be helpful. If the 4 evening visits are centred on food does this mean she does not have carers assist her with personal care (bathing)?

Not sure where you are located; in Scotland it is a requirement to offer a carer's assessment, but even where it is not a requirement it is good practice for SS to ask if there is support that would help you.

Being practical when you change her phone provider/number ask for her number to be added to the telephone preference service (an internet search will show you the contact details) which should prevent any other marketing calls. If she is getting scam calls (bearing in mind that she may not have received any phone calls of this nature at all) talk to your local Trading Standards office; it is known that once a person has responded to any scam mail/calls they get added to a scammers' directory which is circulated. Indications that this might be the case include your Mum receiving large volumes of junk mail.

Practical things which might make her life more comfortable and avoid risks like falls:

• A movement activated night light - this would give her a little light for bathroom visits at night and avoid her stumbling in the dark
• When did she last have an eye test? vision can deteriorate differently with dementia and it can become difficult to differentiate between similar colours/textures - again leading to a fall risk or apparent clumsiness
• You say you labelled her keys - did you use words or symbols/pictures? it can make a difference as can using bright colours

Sadly Dementia does not come with one size fits all solutions and trial and error can become wearing ... but you are not letting anyone down by doing your best. As to when you know about a care home? try and have an objective discussion with your siblings and agree (and write down) when you each think you can no longer carry on as you are. This isn't a written in stone agreement but it gives you some idea that it is getting close to that decision and helps to take some of the emotion out of it when the time comes.