Say hello and introduce yourself

[Chizz]

Hi Chizz and thanks for the reply

My wife is not sociable and I don't think she'd enjoy mixing with new people. I was just wondering if anyone had found any in home activities I could give her. My daugher brings pottery for her to make but it's a once a week thing. We've tied colouring books but the attention span is short!

Cheers

I hear what you about your wife not being sociable.

When I suggested to my wife that we attend a Forget-me-Not cafe (she doesn't like the word dementia and thus not a dementia cafe) she said she didn't want to be with "old" people and she didn't want to be people "like that" even though she was at that time about 70 and was v much like that, even if not self admitted. Anyway I said it would be good to get out, get a cup of tea and a piece of cake, etc etc. Whilst there at our first visit (and thereafter) she didn't seem to like it. Later that day, when I asked her if she liked the singing and the quiz, she said she did like it and are we going tomorrow?

So, I decided not to let her Alz's do the talking, but try a toe in the water, and see how a little "outside" stimuli might help. And it did. We carried on going - cafe once a week on a Fri morning and memory singers once a week on a Weds afternoon - and once a week a garden centre (my wife loves flowers and plants) - for a few years.

Now, she is bedbound and beyond being able to go out at all, and that's why I said the window is short, try and use it. If your wife doesn't like it, sad to say, after a while she won't remember it.

You might a break and meet other carers to compare notes as well.

 

[ignoredson]

I find myself writing here today after a visit with my dad to the solicitors to see if he can keep living in his house if mum divorces him. The pademic was just carnage for my parents having to deal with a then undiagnosed Dad getting increasingly difficult and aggressive. My mum and my sister deciding he was just increasingly abusive rather than admit there was a deeper problem, and then in total denial when he was finally diagnosed. It was a person sent in to provide anger management by a women's refuge that finally suggested dementia. After both me, a person with a public health background and my partner, an academic and a medic had constantly told them he probably had dementia. Both my mu and my dad were completely failed by health and voluntary services during the pandemic, no one would come to see them and they're completely internet illiterate and unwilling to learn. so they had no help. The pandemic created a pressure cooker environment and mum finally left, with no help in place. It turns out she had often left him on his own when things got too difficult. It look as if she gets severe panic attacks around him and they both descend into anxiety spirals which are mutually abusive. When services finally got invovled, their relationship was described as 'toxic' by dad's keyworker. Mum has adopted the victim role to avoid accusations of abandoning a sick man. She has spent all her savings on sheltered accommodation and now keeps coming to dad for money. He is desperate to stay in his home even though he needs to move. Admits this, but keeps moving the goalposts. The memory clinic have discharged him as he is in their eyes now stable in the day to day. He has a cleaner and thats it. they tried to get him a social worker, but they will only now engage to do specific tasks. As dad constantly vacillates about moving no one is prepared to keep engaging. Even after the solicitor presented various choices, he chose to do the least amount. He wants to hold on for as long as possible to any remnants of his former life rather than move on. My worry is it will all suddenly get far worse and things will have to change drastically and with very little of his input. The illness has ripped the family apart, no one really speaks with anyone else. That and a 60 year marriage. The toll on my mental health has been disastrous too.

 

[Louise7]

Hello @ignoredson and welcome to Dementia Talking Point, which is a friendly and support place. So sorry to hear about your parent's situation, and how this has affected your own health, particularly during the pandemic/lock down which was a really difficult time for those with dementia and their families. Your situation sounds quite complex so it's good that there is a solicitor involved - do you or anyone else hold power of attorney for your dad, so that someone will be able to make decisions for him if he does not have the mental capacity to do so himself? The solicitor should be able to explain this process to your dad but you might find this factsheet helpful. If you'd like to talk things through with someone, the people on the Dementia Support Line are really helpful and will hopefully be able to suggest a way forward for you and your parents. They are open between 10am and 4pm over the weekend - details in the link below. Hope this helps, and there is a lot of shared experience here and always someone to listen.

Lasting power of attorney for people with dementia

A Lasting power of attorney (LPA) is a legal tool that lets you choose someone you trust to make decisions for you. There are two different types of LPA: property and affairs LPA and health and welfare LPA. LPAs can make things easier for you and the people you are close to as your dementia...

www.alzheimers.org.uk

Dementia Support Line

If you need dementia support, we’re here for you. Get personalised information, support and advice by calling us on 0333 150 3456.

www.alzheimers.org.uk

 

[ignoredson]

The problem is Mum has POA - both financial and medical. very worried what will happen if and when dad has no capacity to make his own decisions. Mum has limited resources and there is a clear conflict of interest. As she is estranged from him, the solicitor was very clear that she shouldn't really have POA now.

 

[Louise7]

The problem is Mum has POA - both financial and medical. very worried what will happen if and when dad has no capacity to make his own decisions. Mum has limited resources and there is a clear conflict of interest. As she is estranged from him, the solicitor was very clear that she shouldn't really have POA now.

If your dad still has capacity he can revoke the current LPA and make a new one, with a different attorney, although I'm assuming that the solicitor has already explained this to him and he doesn't want to do this?
If your parents divorce then your mum will be removed as attorney when the OPG are advised. It's difficult at the moment if your dad has capacity and willingly gives his money to your mum. If they don't divorce, when your dad loses capacity and there are concerns about how your mum is acting in the role of attorney she can be reported to the OPG and they will investigate the situation. I'm not sure what can be done at the moment if your dad does not want to follow the solicitor's advice but a chat with the Dementia Support Line might help you to find a way forward and reduce your worries.

 

[Anniemac1]

Hi, I’m Ann looking after my 87 yr old mum recently diagnosed with Alzheimers. Add to the mix anxiety, depression & severe sight impairment due to macular degeneration so it’s not a bed of roses for her. (Or rather selfishly, for me).

She’s pretty independent & lives on her own but thankfully has agreed to a carer going in for 1/2hr in the evening, although it will take another 10 weeks to arrange through social care. What I’m finding very hard is the anger & aggression on a near daily basis blaming me for everything that’s not true. She’s always been a blamer when she’s down & sadly this has increased 10 fold with her dementia. She’s saying some very very nasty things & I find it hard that she truly believes them. She says that I don’t see her often & if I do it’s only for 5 minutes. (I take her out at least 3 days a week & pop round other days & do ironing & housework for her!) She has no other company as her sister has been taken into care. I’m at my wits end as it’s getting to the point where I don’t want to see her & am thinking of just doing her shopping once a week &taking her for medical appointments as it’s getting too much.

Any advice would be most welcome as this is just the start of a long tough road for us all.😥

 

[Sarasa]

Welcome to Dementia Talking Point @Anniemac1. I'm glad you've found us as this is a very supportive community and you'll get lots of help and advice here.
First of all do you have Lasting Power of Attorney? If not try to get that organised as it will help you manage your mum's affairs. Maybe flag it up as a way to help her stay independent. We managed to persuade my mum to agree to it because her eyesight was getting bad and it meant we could help her with her bills etc. Your mum might be happier to let you do that if you mention the eyesight, rather than any suggestion that she is no longer capable.
This might also help you find what support is out there near you.

Find support near you

Use our dementia directory to find local support services for people with dementia and their carers in England, Wales and Northern Ireland.

www.alzheimers.org.uk

Finally, you might find it useful to start your own thread in the I care for a person with dementia forum. That way other people are more likely to reply. I also found having a thread useful as a diary of how my mother has changed over the years as her dementia has progressed.

 

[Zipporah]

Hi my parents moved in with me 6 months ago as my mum has Alzheimer’s and vascular Dementia and I wanted to help my dad care for her. Some of the issues we are having is knowing how to communicate with her without it leading to an argument. She is in denial that she has dementia and therefore often doesn’t ask for help, doesn’t feel she needs any help and therefore can easily get angry or defensive when we try to help or tell her what to do or highlight when she’s done something wrong. It is really hard to maintain patience when she is irrational. I understand that distraction can sometimes change the direction of a conversation, but in the moment it is sometimes hard to think what to say in order to distract her. Learning to adapt and change the way you communicate with someone is really hard. I just feel like I am no longer a daughter, but a parent of a stroppy teenager, who can at times behave inappropriately. Boredom is also an issue, trying to find things to do during the day, as my mum has lost so many hobby’s like knitting, reading, gardening, she often spends her days just walking around the house and looking out of the window - is this normal?

 

[Louise7]

Hello @Zipporah and welcome, this is a friendly and supportive group with lots of shared experience. It's very common for someone with dementia to be in denial and not accept that there is anything wrong but as you are finding, it's a very difficult thing to deal with. Apathy can be common too, although it may be that your mum just isn't as able to do undertake her hobbies as she used to, rather than has lost interest. My mum used to walk around the house and it was difficult to find something that she liked doing although she did go to a day centre twice a week for a while and seemed to enjoy that. Perhaps see if there are any similar activities in your area that your mum might enjoy but don't worry too much about trying to find things for her to do during the day if she is content, as sometimes too much stimulation isn't a good idea. When my mum got into a conversation 'loop' she could usually be distracted for a while by coffee and cake but I do know how difficult it is to adapt to changes, and it's usually a case of trial and error to find things that will work for you. Here's a link to a thread about 'compassionate communication' which you might find helpful as it contains lots of tips and techniques about communicating but bear in mind that not everything suggested will work as everyone is different, and what works for one person may well not work for you and your mum. Everyone loses patience at times, none of us are saints and dementia doesn't come with an instruction manual, but it's worth a read as you might find some techniques which will help. I've also added a link to a factsheet about apathy that you might find interesting too. Keep posting here as there's lots of good advice, tips, and support from others who understand.

Compassionate Communication with the Memory Impaired

The following piece was posted a while ago on DSF and made a big impression on me. It is something I have referred to time after time and tried hard to follow. We have many new members who may not have seen it before. Yesterday I posted it on another Thread but thought it might be helpful if...

forum.alzheimers.org.uk

https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/apathy-dementia#:~:text=People with dementia often develop,their apathy can get worse.

 

[Paul K]

Hello from New Zealand

I am supporting my mother’s emotional wellbeing (via phone/text and visits as often as poss) in the UK who is supporting my father who is living with Alzheimer’s (5 years on).
Looks like a valuable forum to be in. I look forward to reading your comments.
Cheers
Paul

 

[Izzy]

Welcome to the forum @Paul K.

It must be hard supporting from such a distance. I’m sure you’ll find this forum helpful.

 

[NicholaM]

My mum was diagnosed with Alzheimers a little over a year ago. She is 76. My dad is 82 and has arthritis but is doing his best to look after her. I live nearby but work full time. Mum has gone downhill very quickly recently - she had continence problems, not sleeping and eating properly and my dad is now really struggling to cope. Mum has regular emotional breakdowns which is not something he can deal with so mum bottles it up until she sees me and then let’s it all out. She is also starting to struggle with getting dressed etc. She is very aware of her “failings” (her description not mine) and is losing her confidence in her ability to go out by herself. We have arranged to see her Dementia Support Worker so dad can hopefully take the opportunity to discuss how he is finding things increasingly difficult and see what our options are. I find I am having to be there for both of them constantly. Hoping to find support and advice from this group as things develop. Thank you.

 

[Izzy]

Welcome to the forum @NicholaM. I’m sorry to read about your mum.

You’ll certainly find support and understanding here.

 

[LynneMcV]

Welcome from me too @NicholaM.

I think it can be one of the most emotional stages to go through when the person with dementia is very much aware of their increasingly lost abilities. I remember my husband crying on and off through this stage - it was heartbreaking because I'd never seen him cry before and all the reassurance and talking things through didn't seem to help for very long.

He was eventually prescribed a mild anti-depressant and he coped much better after that.

I am glad that the family is in touch with a Dementia Support Worker - I am sure that will be very helpful.

When you are ready, perhaps start a thread in

I care for a person with dementia

This forum is for people who are involved in the care of a person with dementia.

forum.alzheimers.org.uk

You'll get lots of support here 😊

 

[Chizz]

Dear @NicholaM
Hi and welcome.
From what you say, your dad needs to get an up-to-date care assessment for your mum and a carer's assessment for himself either by referral by GP or through your local authority Adult Social Services. They may say your mum needs to have outside carers come in to help your mum with her personal care, washing, dressing, toileting, etc. Similarly your dad needs to get GP to do a referral to the Incontinence Nurse (who can prescribe pads, pants, bedcover pads, etc.)
Your dad may not want help, but probably could do with it so that he doesn't become a patient.

I have been caring full time for my wife (Alzheimer's) for about 6 years, and for the last 12 months I have carers coming in to "sort out" my wife and it has been hugely helpful.

Best wishes

 

[Hel71]

Hi, my mum was diagnosed with Early Alzheimer's last week, it wasn't a surprise for the family, but just getting my head around what the formal diagnosis means for us, and how it may help by giving us access to additional support. We're lucky in that we have a very supportive family, and have made lots of small adjustments over the last couple of years so are coping, but know it will progress and we may need more help as time moves on. I wasn't aware of this forum, so really please to have stumbled across it!

 

[Gosling]

Hi @Hel71 and welcome to Dementia Talking Point. You have come to the right place as our friendly and supportive members have a wealth of experience of many different aspects of dementia.
I am sorry to hear of your Mum's recent diagnosis. You are correct in that sadly the disease will progress, but it is good that you have a supportive family.
You are more than welcome to raise any issues or questions, or just come here to let off-steam. Have a good look around the forums and ask anything you like. We will try our best to give you helpful suggestions!

 

[Hel71]

Hi @Hel71 and welcome to Dementia Talking Point. You have come to the right place as our friendly and supportive members have a wealth of experience of many different aspects of dementia.
I am sorry to hear of your Mum's recent diagnosis. You are correct in that sadly the disease will progress, but it is good that you have a supportive family.
You are more than welcome to raise any issues or questions, or just come here to let off-steam. Have a good look around the forums and ask anything you like. We will try our best to give you helpful suggestions!

Thank you so much... I've already raised a post as hoping to find a way to help with my therapy dog!

 

[michele246]

Hi, my mum is 82 and just been diagnosed with vascular dementia, but I have suspected had it for maybe 2 years but obviously needed a diagnosis, she has severe copd, and severe heart failure so she struggles with daily tasks as gets out of breath after 2 steps, she has carers 3 times a day to administer medication as she struggles now with time of day! I’m finding it very hard as I do her shopping housework and many hospital appointments, she struggles to make sense of conversations and finds it hard to speak to drs as gets so confused. I work full time so get stressed as she needs me and I feel guilty when I can’t just drop things and help. I have a brother who doesn’t share the load. Feel alone and wish I could do more as I worry about her constantly

 

[canary]

Hello @michele246 and welcome to Talking Point.

You can only do what you can do and it sounds to me as though you do a lot for your mum.
We all know about siblings like that - they are known as "invisibles" on here
xx