Welcome to Talking Point - introduce yourself here

[Monkstone]

I have been reading talking point for a few months now and it is so helpful & reassuring to know I'm not alone.
Mum was diagnosed with Alzheimer's last summer, I knew things weren't right and after she had a successful knee replacement she wasn't coping even though I had moved in with her before.
I've been living with and looking after her for 14 months now. I moved out of my home near by. It's quite a journey being a carer. It was my profession for over 30 years, I had a good career but looking after mum is another thing altogether.
I retired from nursing & midwifery with the idea of doing other things with my life, joining society's etc. After 4 years of doing this I let that go and devoted my time to mum. I have siblings that live away & or work so I'm the main carer. They support all that I do and come home to give me help when they can.
I describe my life with mum & her Alzheimer's as a journey . As all of us know, it encompasses and takes over everything. I'm not sure of the route always and the destination is uncertain. I describe my experience as the gradual dismantling of mums life, bit by bit. She has her sense of humour, loves listening to waltzes, enjoys her food & likes being social but it's not the same mum.
When mum was first diagnosed it hit me hard. We had discussed in the past that she never wanted to be a burden in her old age & if it was ever necessary then get Carers in. We can't have that conversation any more, she doesn't know where she is living, no real context of time & dependent on me for all her care & needs.
I have tried to anticipate what her needs have been & will be and we are at the stage now of trying day care & also respite care for a couple of nights to see how she gets on. I've worked through my grief, sadness, guilt & the sheer rollercoaster of emotions for all of last year. What keeps me going is the thought that it's pay back time for all the years she gave in caring for others in her life. I want to be there for her. I also know that nothing lasts forever and one day she will be gone. I have my moments when I wonder how much longer I can do this especially as mum deteriorates & get the right balance between hanging on and letting go. We have found a care home that she can start having respite care with the idea of moving her there full time. I don't know when at this stage, and will seek help from talking point on this one as this is the hardest part for me. I wish there wasn't a need to move her at all but it's inevitable.

 

[nae sporran]

Welcome to TP, @Monkstone.
It's good that you have supportive siblings, that's part of the battle. My OH loves music too, anything from classical to country to jazz. I know what you mean when you say she's not the same person, but these are the little things like a sense of humour which get us through the hard times and the uncertain future.
I hope you will post a thread when you need more specific advice or just to let off steam, just wanted to welcome you say there's a few can relate to a lot of what you're dealing with.

 

[Monkstone]

Welcome to TP, @Monkstone.
It's good that you have supportive siblings, that's part of the battle. My OH loves music too, anything from classical to country to jazz. I know what you mean when you say she's not the same person, but these are the little things like a sense of humour which get us through the hard times and the uncertain future.
I hope you will post a thread when you need more specific advice or just to let off steam, just wanted to welcome you say there's a few can relate to a lot of what you're dealing with.

Thank you! I'm just getting the hang of navigating my way around the site.

 

[Penny8]

Hi, my name is Susan, and my husband has mixed dementia. He has just turned 60 & has had this awful disease for 6yrs. He is now in a care home & has very little verbal skills, he doesn’t recognise me & now seems to be sleeping quite a lot. We have been married for nearly 37yrs and I miss him so much. I now find that I’m so lonely & my day revolves around visiting my hubby & walking my dog, not that I mind doing either.

 

[Monkstone]

Hi, my name is Susan, and my husband has mixed dementia. He has just turned 60 & has had this awful disease for 6yrs. He is now in a care home & has very little verbal skills, he doesn’t recognise me & now seems to be sleeping quite a lot. We have been married for nearly 37yrs and I miss him so much. I now find that I’m so lonely & my day revolves around visiting my hubby & walking my dog, not that I mind doing either.

I have just posted my first note. Reading your story shows what a spectrum this disease has. I'm so sorry for what has happened to you & your husband. It puts a different perspective on my situation with mum. You are having a hard time of it & I wish you well. Glad you have a dog for some company.

 

[natbites]

Hi my father who is 74 was diagnosed with Alzheimer's last year. He then just 'gave up'. he has always been difficult with a bad temper. He is a man's man type person, women are morons and thick, his words!
He used to go to the gym, run marathons bike ride, but now he just sits in a chair waiting to be fed. He gets angry a lot and demands 'I haven't been fed!' if mum goes to the shops of comes to the rugby with me and my boys on a Sunday. He says she is not allowed to leave the house as she is not a liberated woman!! I am struggling to feel empathy for him or feel anything really for him. He refuses to sign a power of eterny and says no one is getting their **** hands on my money. Various people have tried to convince him it is for mums best interest but he just nods and pretends he doesn't understand, when he does. He has the onset of Alzheimer's and is taking medication.
He refuses to do literally anything for himself apart from wash and dress.
My mum had a stroke 6 months ago and is finding it very hard to cope with him. I am single with two children and work full time, my sister also works full time and my other sister just washed her hands of both our parents and doesn't want to know or help. Both my parents survived cancer twice and my sister just kept away as she is doing now and leaving me to sort everything out and be there for them, well mum in honesty. My sister said 'just let them get on with it'! She takes after her father.
I am worried mum is going to have another stroke, she has a chest infection at the moment and still has to look after him, although I go round there after work i am making myself ill too trying to juggle everything and everyone. I have asked various places for help but they just come round to see mum, stroke her hand and look all sad for her, then leaves and she never hears from them again, The Hub in Mitcham being one of those places.

 

[FKH]

Hi Nat,

That sounds like a lot going on for you! It's difficult to advise without knowing your location and what help might therefore be available for you. Perhaps the best thing I could suggest is to ring the National Dementia Helpline on 0300 222 11 22. You can speak to someone confidentially and they can signpost you to sources of support that might be available. Because your dad has a diagnosis that will make certain things easier- bear in mind that anyone classed as a carer may also be entitled to support and help. You would need a carers assessment for this, but that's something else you could explore with a dementia Navigator if there's one in your area.

Best of luck!

 

[natbites]

Hi Nat,

That sounds like a lot going on for you! It's difficult to advise without knowing your location and what help might therefore be available for you. Perhaps the best thing I could suggest is to ring the National Dementia Helpline on 0300 222 11 22. You can speak to someone confidentially and they can signpost you to sources of support that might be available. Because your dad has a diagnosis that will make certain things easier- bear in mind that anyone classed as a carer may also be entitled to support and help. You would need a carers assessment for this, but that's something else you could explore with a dementia Navigator if there's one in your area.

Best of luck!

Dad goes to the Hub in Mitcham, a dementia clinic. They are all helpful when you are there but when I have asked how to get help at home for mum they say 'we don't so that'. I have gotten various people to go to see mum without me there so they can see she cant cope with him but they don't do anything but write notes and say they will be in touch, but a year later no one still helps.
Dad can find the shop that sells his beer but not the kitchen to feed himself funnily enough. I think sometimes my father is just happy to sit in a chair with everyone doing everything for him.
He can be so nasty and vindictive, telling me to do as I am told and like it! I am 46 years old and have brought two boys up alone for 18 years.
Mum has asked for help but s I said they just send some one round and she doesn't hear from them again. My mum said to me the other day what was the point of surviving cancer and a stroke when her life is a prison. I want to change that for her but don't know how, there are just not enough hours in the day.

 

[Careroncoffee]

Good afternoon and thanks for having me. I'm here as I have recently moved in with mum so she can stay at home. Two years down the line of memory/behavior issues we finally have a date for a memory clinic appointment, however I'd say she has moderate Altzheimers type dementia from her symptoms. Mum also is unable to walk due to a longstanding disability and is completely deaf. Things are OK at the moment, especially if I discount (some of) the professionals. Thank you to everyone who posts, adding to the information available on dementia and giving newbies like me, much needed insight. Sending hugs, coffee, chocolate, cake, gin........................

 

[Nette]

Hello, I am in my early sixties and my husband was diagnosed with early onset Alzheimers in 2016. I am finding it really hard at the moment trying to deal with his constant mood swings and aggression. He gets really frustrated about something and turns into Mister Nasty. As well as saying really horrible things to me, he has slapped and kicked me and I am worried that at some point it may turn into a punch. I know he doesn't really mean it but it is very upsetting.
I am sure that I am not the only one that is having this problem and a little advise will help. It is good to know that I am not alone thanks to your forum.

 

[Lindiloo20]

Hello everyone. i have just signed up today as I have slowly come to realise that I need support caring for my wife .She is 69 and has been living with Alzheimers for nearly 5 years .We have been married for 48 years and met at school!!The thing that as made me turn to Talking Points is that just this week she has is telling me that her husband has gone away. She talks to me as if I am a new person come into her life and home and asks me all about myself and telling me of the things she likes doing with her husband .She wonders where he has gone but is glad i'm with her to care and support her.She may slip back into realising I am her husband but then goes back to wondering where I've gone again.I feel such a sense of loss.

So sorry to read this. I saw a film a few years ago called the Notebook in which this exact situation was played out. It's absolutely heart breaking to watch and I really feel for you going through it in real life. In the movie the husband read his wife stories of things they used to do together which brought her so much joy. She fleeted in and out of recognizing him and he was devastated, but the reading brought her round. So sorry again and hope you find strength in these pages and meet others in similar situation. I recount endless stories of my childhood to my mum, and she loves it. It's really hard

 

[Mipsydoo]

Bless you its so hard, we are about 4 years down the road from you, my mum has accepted her diagnosis and in general is happy, physically she is well, shes 89, she does take most things out on me, but im the one she sees most,her GP referred me to the admiral nurses they are for ME and my siblings, they have been once and are lovely, can u get them in your area? my mum grumbles a lot, I cook/chill for her, im a good cook, she has said so all my life ( im 64 ) but she constantly moans meals are too wet, too dry , to small, too big, etc etc, life is really hard, I do have a lot of help from other family members, at present mums in a housing association flat, I think she needs residential , but only 2 family members agree with me, so im afraid we are just WAITING for something awful to happen, shes wondered 3 times, we have had to isolate the cooker as she was very dangerous, and she is now really struggling with microwave, kettle and toaster ( broken two ) its getting too much for me as im unwell but what choice do I have, best of luck Mipsydoo

Such a pressure at times .

Bless you thank you for your kind words .
At present I’m having a ding dong with Mum once a week , unfortunately she gets really panicky or confused about something , then she’s defensive or angry . My brothers don’t see this side but if they do I’m usually a receiver of texts to calm the situation .
My worry is as mums 65 , lives with my younger brother ( which at present is a blessing) . But over the last month she appears worse . Her diagnosis has been given , brain scan next week then waiting for appt for result and pills . I’m not sure if it’s the wait and worry making her worse or the disease . In one story she can give me 3 different versions , forgets most things . I’ve now stopped texting her dates , as she reads old ones and goes into a blind panic . The same if we have a disagreement over text , make up , then she reads it and forgets we are ok . The other day I had a 4 minute voicemail because she thought I wasn’t going to help her anymore .
I know I have a long road ahead not a nice one , just makes me want to enjoy the peaceful days when they happen .
Wish you well , hopefully family members will join your view , makes life easier if United ... I’ve heard
Take care & wishing you , your mum all the best x

 

[karaokePete]

Hello, I am in my early sixties and my husband was diagnosed with early onset Alzheimers in 2016. I am finding it really hard at the moment trying to deal with his constant mood swings and aggression. He gets really frustrated about something and turns into Mister Nasty. As well as saying really horrible things to me, he has slapped and kicked me and I am worried that at some point it may turn into a punch. I know he doesn't really mean it but it is very upsetting.
I am sure that I am not the only one that is having this problem and a little advise will help. It is good to know that I am not alone thanks to your forum.

Hello and welcome to TP. You will find this a friendly, informative and supportive place.

I'm sorry to read about the level of difficulties you are having. I have faced the mood swings and verbal insults but not physical violence. You do not have to accept actual, or threat of, physical violence. When a person with dementia(PWD) gets agitated it may be because of their confusion about what is going on, or even a perception that they are under threat because they don't understand what is happening to them or even recognise the person they are with. It is important to keep yourself safe by having a secure place to which you can retreat when things kick off. A room with a lock and an escape window sort of thing. Keep a mobile on you at all times so that you have the ability to call for help when you have to retreat. It may seem harsh, but I have seen it suggested that if violence occurs the police should be informed so that the behaviour is documented and SS involved, if required, at the time or a future date.

You may find it useful to talk to an expert and the help-line details are:-
National Dementia Helpline
0300 222 11 22
Our helpline advisers are here for you.

Helpline opening hours:
Monday to Wednesday 9am – 8pm
Thursday and Friday 9am – 5pm
Saturday and Sunday 10am – 4pm

Keep safe and keep posting. I would suggest you even start your own thread so that you can keep us advised and get help from our members. We are all here for you and I'm sure others with specific experience will answer you.

 

[karaokePete]

Good afternoon and thanks for having me. I'm here as I have recently moved in with mum so she can stay at home. Two years down the line of memory/behavior issues we finally have a date for a memory clinic appointment, however I'd say she has moderate Altzheimers type dementia from her symptoms. Mum also is unable to walk due to a longstanding disability and is completely deaf. Things are OK at the moment, especially if I discount (some of) the professionals. Thank you to everyone who posts, adding to the information available on dementia and giving newbies like me, much needed insight. Sending hugs, coffee, chocolate, cake, gin........................

Hello and welcome to TP. You will find this a friendly, informative and supportive place. I see you have already been looking around the site, as I did when I first joined. Do keep posting as we are all here for you if you need advice or just a place to let off steam

 

[Shedrech]

hello @natbites
welcome from me too
I'm not sure whether an assessment of your dad's care needs has been arranged with your parents' Local Authority Adult Services - your dad has a right to this
if one has taken place, contact them again and say an urgent re-assessment is needed - tell them your mum has health problems of her own and is finding it extremely difficult to cope (mention the possibility of carer breakdown) - in fact your mum has a right to a carers assessment too
it may be that your dad doesn't yet need home care visits - but ask for a sitter, day care and respite so that your mum gets a break and therefore may be able to continue to provide care at home - might you also look into having a cleaner - and ways to help your mum with shopping/cooking eg online shopping with delivery, buying ready meals (I can vouch that the M&S ones are pretty good) or even having eg Wiltshire Farm Foods delivered
if, however, your dad refuses to accept a care package, the LA cannot force care on him, especially as long as he has capacity - this may be the difficulty your mum is encountering

 

[Annie Ka]

I've just joined the site following my Dad's dementia diagnosis. He's not really managing well on his own, although he doesn't recognise this, and I live nearly two hours drive away. I'm feeling sad, overwhelmed and unsure of what to expect next. Finding this forum has already provided some very welcome support, and reassurance.

 

[Amethyst59]

@Annie Ka I am so glad that you have found the forum...but very sorry that your dad is ill, and you needed to. You will find lots of people here, in exactly your position, who will be able to empathise, advise and support you. It is so scary when a diagnosis is first given, but there are not usually dramatic changes in a PWD (person with dementia). He is still your dad, still the same this week as he was last, despite the diagnosis. The more you learn, the more you can support your dad, and this is a good place to start. The Altzheimer’s Society have a wide range of fact sheets that are really readable, or if you have specific questions you can ask them on the forum. You might want to start your own thread, and then any advise or questions answered will all be in one place. Just click twice on the blue ‘Forums’ and select ‘I care for a person with dementia’ and then click on ‘start a new thread’.

 

[Annie Ka]

@Annie Ka I am so glad that you have found the forum...but very sorry that your dad is ill, and you needed to. You will find lots of people here, in exactly your position, who will be able to empathise, advise and support you. It is so scary when a diagnosis is first given, but there are not usually dramatic changes in a PWD (person with dementia). He is still your dad, still the same this week as he was last, despite the diagnosis. The more you learn, the more you can support your dad, and this is a good place to start. The Altzheimer’s Society have a wide range of fact sheets that are really readable, or if you have specific questions you can ask them on the forum. You might want to start your own thread, and then any advise or questions answered will all be in one place. Just click twice on the blue ‘Forums’ and select ‘I care for a person with dementia’ and then click on ‘start a new thread’.

Thank you for the warm welcome, and the instructions on how to post...that had me foxed for a bit.

 

[Amethyst59]

Thank you for the warm welcome, and the instructions on how to post...that had me foxed for a bit.

You are very welcome.

 

[Ludi]

Hello everyone, my husband has Alzheimer's and is at present in hospital after falling downstairs and breaking his arm. He is delirious at times and his dementia has got worse during the 10 days he's been hospital. He has consistently refused almost all food and drink and has said he wants to die. He had already told me months ago that when he lost his independence and his abilities he wanted me to help him die. We both believe that he should be allowed to make that choice, although of course we know it's not legally allowed. I also think that Alzheimer's should be classified as a terminal illness, as there is no cure; nor is there likely to be one in the next few years. Are there other people on this Forum who feel the same way as myself and my husband?