Coping with dementia in a parent

My Mum was never actually diagnosed with dementia though it was obvious what was wrong. I used to drive 80 miles each way twice a week to see her and take her out. She had carers come in a couple of times a day to sort out meals and give her meds but it really became unsafe to leave her at home. She was always desperate for company and would invite anyone who came to the door into the house, resulting in a low life stealing her purse. It got so that she was disturbing different neighbours in the evening, inventing excuses eg the heating isn’t working and of course she denied it all if you spoke about it. In the end she had a fall and broke a rib so we carted her off to a home to look after her “while it got better” . She got the company she craved and never had to do anything for herself again until she died 4 years later. She was always fervently anti going in a home but soon accepted that was where she lived. We are bound to feel guilty but we have to remember they are not the same person any more and we have to do what we can to keep them safe and well as they decline.

I really feel for you. I wouldn't wish that situation on anyone. I went through it with my own mum. In a way, I was 'lucky' because the decision on whether she would go into care was taken out of my hands. Her condition escalated very suddenly and the doctors were prepared to commit her if she wouldn't go into hospital voluntarily, which she eventually agreed to do. From there, she was eventually moved into a wonderful care home until she passed away several years later. Do seek help from the Alzheimer's Society, as has been suggested by others. They are very good.

True kitty I can remember so vividly my Mum (vascular dementia) saying ‘ I don’t like this Jax and I’m scared’ what do you do..I just distracted her, although inside I was in pieces.

kittylester

Just to add that not all people are unaware of their diagnosis. People living with vascular dementia particularly can have an insight and it can lead to depression.

Kitty
How true. My friends father committed suicide in one of his lucid episodes.

Is there still such a person as an EMI (elderly mentally ill) nurse? Our GP put us in touch with one and he was wonderful - unlike the social workers etc.

I didn't have any other family to help and the stress was enormous and eventually I couldn't cope any more and my mum had to go into a home. I sold her house to pay the cost.

Everyone dealing with this sort of situation is only human themselves and can easily be forgiven for having a natural response.

On the Carer's courses we encourage people to get out of the room and scream, shout, dig the garden, go for a stompy walk etc.

I agree with those giving the advice never to try to bring your relative into their world but try to enter their reality. But I have to say I failed so often with this. I still feel I failed.

I am not a great reader of MSN gossip but I do like to know how Kate Garraway and her husband are getting on. As far as I know, he doesn't have any form of dementia but they don't appear to be able to say what he has been left with. I read these words this morning.

She said: It's both emotional and physical because your relationship with the person has changed, but also what I've found is that some of things that floor me are when there are moments when Derek is very present and then the next moment he is not.

You get a strange, overwhelming feeling of loneliness where you suddenly feel the person is lost and you want to grab them, fix them - bring them back.

That's how dementia, not mum, made me feel. It made me feel desperately inadequate too. When this felt at its worst was when I found out about the Admiral Nurses and I am still so thankful they exist. I couldn't have gone to the meetings suggested - which would have undoubtedly helped - but just talking to someone made a difference. It is so important to get out of the bubble of dementia so my "best advice" would be to talk to those who can and will help and then you will be better able to cope for your relative - and yourself.

I recently visited a friend who has been diagnosed with Alzheimer’s.

She uses Alexa a lot to keep track of things like what day it is, time of year, names of people and things. I don’t know how sophisticated Alexa can be, but I was impressed.

And, as she says, Alexa never get annoyed, no matter how often you ask what time it is.

Sorry to hear this. My Mum is 86 and registered blind (macular degeneration). She has short term memory loss and anxiety which is getting worse. She set up POA for my brother and I years ago when my father was ill and died which has been helpful. I order her shopping from Sainsburys and check her fridge every time I am in. Have thrown away countless things like you but as I order the meals and she freezes them fortunately there are not too many. Anything going wrong sends her into a state of panic and I have had to watch what I say and repeat everything. Even mail sends her into a panic. I look after her bank account - not much just keep a check and pay bills that are not DD's. My brother deals with power and heating contracts - her supplier has recently gone under and new one started this month. I live 10 minutes away but my brother is about 2 hours so I do quite a lot of week to week care. She has excellent neighbours and they have both our contact details. She has a keypad and an alarm which is worn round her neck. We got a true call device for her phone which I manage. She has a list of trusted callers (could not believe how many spam calls from here and overseas she was getting) and you can also set it to stop outgoing calls to certain people if you need. Not required for Mum. Any help please PM me. It's not quite the same as dementia but sad seeing bits of memory going. She can remember everything from the past - more than me! And political history of the world just not what to have for lunch or how to use devices etc.

Just to add that not all people are unaware of their diagnosis. People living with vascular dementia particularly can have an insight and it can lead to depression.

Hi Mrs Greenfingers. Some solid advice above.
Dementia is such a wide umbrella term and within each diagnosis people vary drastically in how they react.
It's an extremely hard road and devastating for all of you.
My father was diagnosed with vascular dementia in 2010. For a few years before that we knew something was wrong but were pretty much in denial.
I asked for a social services assessment which at that time opened the door to lots of support services such as home care. Eventually when my mother died dad moved in with me. It was at times exhausting but I gave up my job to be a FT carer and we had a couple of happy years. Tbh after years of coordinating home care it was a relief to have him here.!
Times are very different now and as I'm sure you are aware care is in crisis.
As i said every individual is just that,an individual. Some peoples personality changes to an extent that residential care is the only option. Others dont. My dad remained sweet and good tempered throughout. I was able to cope with caring for him. Some individuals become more challenging. I was a support worker in a residential home for older people with dementia and supporting relatives was as important as the resident. For many it is the most suitable,and safest option.
My advice is as above.
Get all the help you can.
Alzheimer's Society and Age UK are exceptional and often have forums for support,whatever you are experiencing someone will be able to help.
Your local council will have a carers group with lots of information and support. One particular perk of ours was to be able to book a beach hut for free 3 times a year. A little thing but some very happy memories.
Indeed you have to enter the persons world on the day. Challenging rarely works but distracting can.it can be very hard but all you can do is your best.
I think that's the best advice I can give. Do your best and be very kind to yourself. Acknowledge the difficult journey you are going through and make sure you look after yourself. Wishing you all the best?

My mum has Alzheimer’s but is still in denial 7 years after diagnosis! She lived alone with it for over 5 years with increasing support from us three children. We found technology very helpful in allowing her this independence and keeping her safe.

I had to be sneaky and get the internet installed while my brother took her out so we could install several Ring cameras and a doorbell which meant we could intercept door step scammers as we got the alerts to our phones. We also had the ability to speak through the security lights and cameras which was helpful when mum was upset about cars parking outside her house and would go and kick them! Once I recorded a man trying to get money out of her at the door and was able to pass it on to the police who knew him and arrested him for fraud.

We also had two internal cameras downstairs so we knew that mum was alright and had got up etc. It also showed us how much she could no longer do, like forgetting how to use the cooker or kettle, once she almost put in on the gas hop - we then had a gas fitter install a cut off valve so mum could not use the hob at all.

We bought a very clever call blocker which enabled me to create a list of accepted numbers and bar all others, anyone not on the list got a message from me giving them my number to call first. Mum did not need to do anything unlike some of the more common call blockers where you have to press buttons to reject calls.

When mum forgot how to use the central heating controls and kept messing with the thermostat and boiler, we installed Hive so we had control but left her the old, disconnected, thermostat so she could still twiddle with it

Like you, we had POA done as soon as she got the diagnosis at the very early stages and we had to sort out her money fairly early on when we found out she had over £80,000 in her current account and was giving her bank details out to scammers over the phone! We arranged for her to keep her bank card as at that time she could still use it but went paperless so she no longer got bank statements so was not aware that we had moved most of her money to a secure account. I scratched off the cvc numbers from the back of the card so it was no use for phone sales.

Eventually mum stopped cooking, showering or cleaning so we had to make extended daily visits to make sure she ate and with the help of carers at weekends we managed for quite a long time. But after a fall requiring stitches, we had reached the end of the road and as the first lockdown was starting, the hospital agreed with us and we found a safe care home for her to go to.

I joined the chat forum Talking Point on the Alzheimer’s Society web site, the best thing I did for advice and support.

It’s a good idea to get hold of the originals of important paper work or take photos as a common problem is people with dementia throwing such things away because they no longer know what they are.

I sometimes feel ashamed of the lies we told mum and the sneaky things we did but they were all done with the best intentions.

My brother and I were in a similar position to you PippaZ.

It's now nearly 20 years since mum died. She was eventually diagnosed with dementia when she was 70. Dad found it very difficult to look after her. He'd always done all the cooking but I would often find him in the garden in tears when I did my weekend visit. He died when mum was 75. She refused all outside help and like you mrsgreenfingers56, I was often told off. We did manage to sort out POA which was not in place when dad died. This helped immensely.

We both worked and tried to manage with morning, evening and full weekend visits. Visits to a memory clinic were arranged. She did two then refused. "It's not for me" was her answer. Daily care was arrange but she refused them entry to the house. The local Alzheimer's Society group were wonderful and we attended many of their meetings. We never discussed with mum her condition. What I talked to her about, was forgotten within minutes. A reminder would get a sharp retort. Old photographs were the mainstay of my chats with her.

After almost six months mum went to a care home. That was a decision neither of us wanted to make but there mum was safe. She loved her day out with me at the weekends and I'd take her to places I hoped she would remember.

PippaZ's last touching paragraph says it perfectly for me. Your mum needs help and that need will grow. You too need help. Talking to others, in a similar situation, is the best advice I can offer ?

It isn't uncommon for people to have very poor insight when they have dementia. They can't remember that they forgot something or that they've had other issues.

Sadly, depending on your mother's care needs, it may reach a point where you DO have to place her in a home. It's important to remember that unlike a child, she does not have any capacity to learn. Her needs will increase rather than decrease. She may reach a point where she starts confusing days and nights and where she cannot be left on her own. I'm not saying this is what WILL happen, but it certainly COULD happen. If she does eventually reach a point where you cannot care for her at home, it's important not to feel guilty. There is a considerable difference between leaving her in the cheapest facility you can find, and taking the time to find a nice facility where you can visit her regularly.

I agree with those who said live in her world. You aren't lying to her. You're finding ways to help her without getting her upset or frustrated.

There are Admiral Nurses you can contact mrsgreenfingers56: www.dementiauk.org/get-support/dementia-helpline-alzheimers-helpline/ Please do so now and take all the help you can get. Your mum is behaving just as mine did. I had always said I would help her stay at home - as long as she was safe. Obviously, when she finally went into a home, a few weeks before her 98th birthday she did not understand why as she thought she was perfectly able to look after herself. I did not know about the Admiral Nurses for some in the early years but they can help you and explain the best way to help your mum.

Just one thought. When mum first went to the Memory Clinic (more lovely people) the doctor asked her if she wanted to know his diagnosis. I think she would have liked to say no - but she decided she did after a chat with me (trying not to influence) and the kind doctor. She just decided he didn't know what he was talking about.

My mother was lovely, kind, strong-willed and determined. The closeness of our relationship meant that the slow disappearance of empathy combined with the high level of anxiety about managing that I can see she had, didn't make for an easy time. But you can get help so do ask for it.

Excellent advice Kitty we did that with my step dad and it spared upset all round.

I don't have any useful input as I haven't had experience personally and see you are waiting for the results of the brain scan, wishing your Mum the best outcome.

Kitty
How true. It’s amazing how inventive you can get with the some of your answers. I believe that entering into their world is one of the first/ most important lessons to learn.

Please contact the Alzheimer's Society. They are brilliant. Their dementia support workers will help you so much.

No point telling your mum that she has dementia - she will be distressed, forget, then be distressed when you tell her again.

The best advice is never to argue with someone living with dementia or try to bring them into your world but try to enter their reality. And distract.

And please look at the new 'Benefits' forum on here.

I’m so sorry. I have no experience I’m afraid but didn’t want to pass by without saying I realise how difficult this is and that I feel for you. Someone else will come along soon with brilliant advice I’m sure.?