Welcome to Talking Point - introduce yourself here

[Orlaworld]

Hello. I've joined this forum as I am the main carer for my mum who has undiagnosed dementia, and although there are people around me, there's not really anyone I can talk to.
When I'm not at work or looking after my kids, I spend a lot of time driving back and forth to my mum's, trying to help, trying not to get frustrated, trying not to feel resentful, and then usually feeling sad.
Today was worse than usual. I can't think of anything else to add right now but perhaps tomorrow might be better and I will feel more coherent.

 

[Shedrech]

hello @Orlaworld
a warm welcome to TP
sorry to read that you've had a tough day
you've now a whole host of us to talk things through with
so when you're ready, just start a thread of your own and chat about anything that's on your mind

 

[Roller Lady]

Hello all, I've just joined the forum after finding a really helpful thread about registering an LPA with the Post Office for a card account. Thanks for saving me from some of the hassle - I'm sure that there will be some along the way!
My husband and I care for his parents. His father has just gone into residential care and has a diagnosis of mixed dementia and is no longer mobile. His mum has physical health issues and is coming to terms with her increasing frailty and my father in law leaving home and all that that involves.
Navigating the complexities of LPA is very variable and there is nothing like first hand experience from people who have gone through a process, to help you out. So thank you.

 

[karaokePete]

Hello all, I've just joined the forum after finding a really helpful thread about registering an LPA with the Post Office for a card account. Thanks for saving me from some of the hassle - I'm sure that there will be some along the way!
My husband and I care for his parents. His father has just gone into residential care and has a diagnosis of mixed dementia and is no longer mobile. His mum has physical health issues and is coming to terms with her increasing frailty and my father in law leaving home and all that that involves.
Navigating the complexities of LPA is very variable and there is nothing like first hand experience from people who have gone through a process, to help you out. So thank you.

Hello @Roller Lady, welcome to TP. It’s great that you have already found the site useful. Do take a good look around as you will find the forum a friendly, informative and supportive place. Never hesitate to ask any question of just offload feelings on the forum as there will usually be someone around who can either answer your question and/or understand your problem.

 

[GeG-Canada]

Thank-you, for being here. We live in Canada, but this is the forum that has given me the most help.

My husband (73) had (last spring 2017) an impacted kidney stone - sepsis- septic shock-complications during surgery = Vascular Dementia. Looking back before that, I can now see that he did have a lot of minor strokes - nothing to see physically, but now I do see that some of the mental lapses he had then were caused by the mini-strokes. Fast onset full blown VaD is crappy. He doesn't understand what is wrong - he can't understand the problem with his brain = anger at being told...

The hardest part of our journey is that there is no 'handbook' as to how to cope. I've found that reading here has been a great relief for me. I've read what could happen in our journey - some has , some hasn't.

We've been together 43 years..... He believes we've been together 2

When we go for walks downtown, he talks about his ex-wife who used to work at that particular store, I walk a few steps ahead and cry. He doesn't use my name when he talks to people..... I'm = HER.

I put a lot of my feeling down on paper in 'prose'.which helps me to cope. One of the threads I read today talked about being called nasty names, been there... hopefully this will help them.

~~~
WORDS spoken!
He doesn’t remember...
I can’t forget...
~~~

Again, thank-you for being here, Gayle

 

[karaokePete]

Hello @GeG-Canada, welcome to TP.
I’m glad you find the site useful. Never be afraid to post questions, have a vent or just write here as the members are all on the same journey and are a pretty friendly, informative and supportive crew.

 

[Joolsy 1]

Hi
I'm new to talking point and have joined because my dad has dementia. He went into a great care home last October and a month later my mum joined him as she was unable to cope alone at home due to mobility problems after a fall.
This has all happened so fast and has left our family reeling and completely heartbroken. My mum is not coping at all with her change in circumstances and cannot accept my dad has this condition. She is very depressed and cries all the time.
I would like to be able to support them both better somehow.

 

[nae sporran]

Welcome to Talking Point, @Joolsy 1. Sorry to hear about the double hit your parents and your family have had to deal with. Are they both in the same care home? Has your mum spoken to her GP about her depression, it's common and understandable to be knocked out mentally and emotionally by this diagnosis and I needed counselling last year to deal with it all while my partner's children are only just realising what is going on after 7 years.
You will find plenty of more helpful advice here and I would also recommend contacting your local carer support centre for carers courses and groups where you can chat with people who understand over a cup of tea and a biscuit.

 

[xxangelxx]

hi all new to this. my husband 53 was diagnosed with mci last year. Memory is getting worse and struggling more finishing his sentences off as he cant remember what he was just saying. Im really worried now as he seems to have gotten worse over this past year He is unable to go to appointments on his own as he cant seem to take in what the dr is telling him.He cant seem to concentrate on roads while hes out and about nearly been knocked down by car a few times now. I seem to becoming his full time career i feel i am losing my husband and best friend who i love very much.I just want to make it all better. Anyone else know about mci and what will make it better.

 

[canary]

Hello @xxangelxx and welcome to Talking Point
My husband was initially diagnosed with MCI and then later with FrontoTemporal Dementia (FTD) and I understand what you mean about feeling that you are losing your best friend.
Becoming a full time carer is something that you sort of slide into - you do a bit more, and a bit more and.... then you suddenly realise that you are a carer. It sounds like you need to be with him when he goes out so that you can keep an eye on him.
About 40% of people with MCI go on to develop dementia of some sort, so I would recommend that you go back to the memory clinic for some further tests.

 

[Obis mum]

Hi Im 64 retired. I have one daughter and 3 grandsons, I love travelling when we can, im not well myself, but wont bother with that, my 89 year old mum has mixed dementia, as you all know its heartbreaking shes had 8 children and been a very strong woman, at present she lives in sheltered accommodation, and as we are a big family she gets 3 visitors a day, I employ 3 private carers in case we become ill or to cover when we are on holiday, Mum wont let them do anything not even make a drink, shes very stubborn, we seem to get a new problem every week or so, she has no routine whatsoever, we have had to isolate the cooker as she became very very dangerous with it, she now is not coping well with kettle, toaster, and microwave, we provide all her food and 2 of us cook /chill for her, but often she throws meals away, and sometimes hides them, luckily shes not underweight so its not a problem as yet, she nibbles constantly, sweets, ice cream, crisps, biscuits, but tells everyone she eats like a bird and makes a huge fuss when a meal is put in front of her, we just let her do as she wishes, its awful, I feel strongly that she is very close to needing to go in a home but other members of the family who dont spend as much time with her dont support me, mind you I understand getting her in a home is not easy, she has no property to sell, and no huge amount of savings either

 

[Ghoward515]

Hi!

My Grandad got diagnosed with Alzheimer's disease last year when he started telling us all he had to pack to go on holiday, or that he lived in his old house. Since then things have spiralled, whilst he now has tablets for them he has become accustomed to hiding them in many places such as the fridge, down the sofa, the wardrobe etc. He is very forgetful in present day but has an incredible memory of everything he did up until the point his short-term memory began to fade. He is 88 (will be 89) this year so is a good age. My Granny, who is 83 is his full time registered carer despite, the fact she shouldn't be and due to the stress of dealing with and looking after my Grandad she suffered a heart attack last Friday and is waiting for surgery. He seems very lost without her and keeps asking where she is every hour on the hour and gets sad when he assumes she didn't tell him directly. I (their granddaughter) have come back from Uni to look after him as he can't be left alone. I had a bad night with him the first night as we couldn't find his tablets, he was convinced he had to find the car keys (to a car he doesn't have anymore) and he needed to lock the car. He tried to leave the house so I've now taken action in locking all the doors and taking the keys out. I've been on the phone to social services to get them some help today so hopefully should be better soon. He also gets quite bored and lonely after living such an active life before (he can't walk well now either), he was in a walkers group and drove to places and had his independence but now spends most of his time in the house unless it's to various medical appointments. The support they have been given has only been good from one hospital and they've received no care at home and that's why we have had to take matters in to our hands.

 

[houseofsand]

Hi All,
I have just found out about this forum and thought it might be a source of support to share experiences and feelings with others in a similar situation who may be able to empathise.

My 88 year old mother was clinically diagnosed with Alzheimer's less than a year ago, although in retrospect certain symptoms started to emerge many years before that. However, in the last 5 years or so, especially since my father's death nearly 3 and a half years ago, the deterioration has been more pronounced.

My mother still lives in her own home, pretty much on her own. My brothers 28 year old son does actually live with her but offers very little support. I live about 45 minutes drive away but visit her every week from Wednesday lunchtime until Thursday evening and we are in phone contact every day-sometimes many more.

I think all my feeling of sadness, loss, frustration, anger and fear of the future (both for my mother and me) have been intensified because I have just got back from a 4 night 'break' in a holiday cottage with her while a new, more accessible bathroom, was being installed at her home. Feel completely drained from the experience and was saddened that within less than a day my mum had completely forgotten we had been away and was complaining o having been on her own 'for days and days'.

There is so much to share and get feedback about, but in the first instance just wanted to reach out. My mum is in complete denial about her condition and completely refuses to acknowledge any recognition or concern about her failing memory and the delusions to which she is increasingly subject. it must, at some level, be so frightening and lonely for her. If only we could of been able discuss this in an honest way I think it might of helped us all, but such candour was, and impossible and now it is too late. Lots to share and elicit other peoples experiences about, but this is just by way of an introduction.

 

[karaokePete]

Hello @houseofsand, welcome to TP. You will find this a friendly, informative and supportive place.
You mum isn't so much in denial but rather in her own reality. However, your mum is still there so don't give up on her. Have a good look around the site to see what you can learn that may be useful. Keep posting with any specific questions or even just observations and someone will always respond to you. You may find this thread on communication interesting and useful:-

https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/

 

[EmmaRNK]

Hi everyone. My mother has had a memory problem for over 6 years now, she hasn’t been to the Dr’s for 23 years, she’s 66 and point blank refuses to go. My father is 70 and was diagnosed with cancer in May 2016 (Multiple Myeloma) he had a stem cell transplant in March 2017 and is in remission. Multiple Myeloma is treatable but not cureable. Today he had surgery to remove a cataract and next Monday he is having the other cataract in his other eye removed. When I took my father home at 10.30pm tonight, my Mum hadn’t a clue where we had been or what my Dad had had done and was verbally abusive to me and pushed me out the house. She drinks to much and tomorrow when I go round there house, she won’t remember a thing. I’ve spoke to our family GP and he said, unless she goes to see him herself, he can’t do anything, i’m an only child, so have no one to share the responsibilities with, I just don’t know what to do. Sorry for the long post and thank you for reading. Xx

 

[LadyA]

Hello, @EmmaRNK and welcome. Unfortunately, this refusal to go to the doctor is very common. Would she accompany your dad to an appointment? And of course, would the doctor go along with this? Several times, I got my husband to the doctor by having him accompany me to an appointment. But my husband's doctor was very experienced with dementia, and was brilliant! He would pretend to be examining me, listening to my chest, looking at my throat, but would be chatting away to my husband the whole time, and gathering all the information he needed!

If something like that doesn't work, then for the moment, I don't really see what you can do. I would put all your concerns about your mum in writing to the doctor, so they are on file. Sadly, sometimes, it's a case of having to wait for a crisis to occur before being able to get someone the help they need.

 

[Shedrech]

hello @Ghoward515
welcome to TP
what a lot is happening - I hope your granny is being well looked after - the strain of providing the physical care for her husband will have added to her situation but it's not probably not the underlying cause of the heart attack - best wishes for her surgery
you've done well to contact their Local Authority Adult Services and request emergency support - keep on at them and make sure that they know exactly what your granddad's situation is - tell them that you have to go back to university and that he is incapable of surviving on his own even with home care visits; that your granny was his sole carer, without support (which is shocking) and without her he is a 'vulnerable adult' who is 'at risk' of harm due to self neglect and that as the LA have the 'duty of care' they need to step in and provide 24 hour care immediately - also make it clear that your granny will not be able to look after him when she is discharged as she will need care herself to help her recuperate
do not allow Adult Services to begin to think that you can stay with your granddad - he needs 24 hour supervision and no one person can provide that - and you need to get back to university to continue your studies - you mentioned 'we', so I assume there are other family members helping out too
you've done well seeing he is safe overnight - your grandparents are very fortunate to have such a loving and resourceful granddaughter - I'm sure, though, that they will want to know that you are able to go back to your studies; I bet they are really proud of you
do let us know how things are
and post with any questions you have as there's lots of help on offer here
maybe in this forum
https://forum.alzheimers.org.uk/forums/i-care-for-a-person-with-dementia.70/
best wishes to you all

 

[Shedrech]

hello @Obis mum
and welcome to TP
thank goodness you are watching over your mum as from what you describe, she does need much more care than other members of the family are ready to accept - it's often the way that one person sees and accepts the situation before others
I'm not sure whether your mum has had an assessment of her care needs by her Local Authority Adult Services - if not, then that is the way to go; if yes, then ask for a re-assessment and make brutally clear what her situation is - from the assessment a care package will be put in place - push for as much as YOU believe is needed - you are right that the LA will want to steer away from a care home placement; the policy is to keep someone in their own home for as long as possible - if your mum hasn't had care from them, it will take proving that 4 home care visits a day isn't enough to provide for her needs and keep her safe - so ask for 4 visits plus time at a day care centre to occupy her during the day, a sitter and a visit from an OT to suggest aids and adaptions that will help her cope in her home
if your mum has little savings and is on a low income, the LA will at least part fund her care - YOU should not be paying any of her care fees
do apply for Attendance Allowance as this will help pay her fees - AgeUK or CAB can help you fill in the forms - and also look into a disregard of her Council Tax due to her diagnosis (if she lives alone, she would pay no CT)
and this will be tough for you - step back from having the family providing so much care - it's brilliant that you are, and of course we want to look after our parent - but the LA will happily let you continue and this will mask the severity of her needs, so will keep her in her home longer (which is fine, if she is safe there; not so fine when really the time has come to move into full-time care) - it also takes it toll on those providing the care
do look into having a carer's assessment for yourself, you have a right to this - and carer's allowance (though, depending on your circumstances, you may not be eligible, and your mum must be receiving AA or another qualifying benefit for you to qualify)
keep posting - it helps to share experiences

 

[ianrut]

Hello This is my first attempt to meet fellow spirits .I am feeling very sad and lonely since my wife Mary moved into a nursing home .I have cared for her for 3 years as she succumbed to alzheimers .Eventually i could no longer cope with 24/7. Now I am lost without her.
I live near Tunbridge Wells and have time to volunteer to do something to help.

 

[karaokePete]

Hello @ianrut, welcome to TP. You will find this a friendly, informative and supportive place. I’m not at the same stage of the dementia journey but just wanted to say hello. Do have a good look around the site and keep posting.