Young mum with onset Alzheimer’s

[Familymatters2022]

Evening everyone ?
This is my first time in here. But today has been a struggle with my mum who is 62. Mum was told she had young onset Alzheimer’s only 4 months ago. She is still very independent and I have organised carers to see her just for 30 mins am an pm. Just for her to get used to the company. But today has been hard.
She phoned every 20 minutes or less. She couldn’t find things in her own home eg toaster. I see my mum everyday but I still work. I have two young children and basically a single mum until the weekend when my husband come home.
I do feel cheated in my life of my dad died when I was 18 now my mum with this now I am 32. I’m very much alone when it comes to my mum. Even though I have 2 younger brothers. I need help on how to help her when she is so lost. I get so upset that she must be feeling so lost an confused.
Thank you for taking the time to read this ❤️ S

 

[update2020]

That’s a really tough situation.

As you have already worked out your Mum is going to need increasing amounts of company and care. Clearly you cannot provide it.

If her diagnosis was only 4 months ago she is probably still seeing clinical staff from the memory service while they settle her medication. They can also assess her support needs. You can also ask Social Services for a needs assessment.

You can use her diagnosis and assessments when you apply for benefits. At 62 she may be eligible for PIP which she can use to pay for support. I hope that you have lasting Power of Attorney - if not try to organise that asap. It makes everything easier. It’s all a lot to do but sadly dementia only progresses in one direction.

 

[Grannie G]

Welcome @Familymatters2022

What a tough situation for you.

There are a couple of links here where you may find something which will be of help for you.

Dementia support services

Alzheimer's Society provides help and hope to anyone affected by dementia. Call our support line, join our online community, find support in your local area or get dementia information.

www.alzheimers.org.uk

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

Your local dementia support services

We are here to help. Find out more about the type of dementia support services available in your area.

www.alzheimers.org.uk

Please keep posting. There are others on the forum who have experience with the problems faced by younger people with dementia and they will be sure to share experiences and offer support.

 

[Familymatters2022]

That’s a really tough situation.

As you have already worked out your Mum is going to need increasing amounts of company and care. Clearly you cannot provide it.

If her diagnosis was only 4 months ago she is probably still seeing clinical staff from the memory service while they settle her medication. They can also assess her support needs. You can also ask Social Services for a needs assessment.

You can use her diagnosis and assessments when you apply for benefits. At 62 she may be eligible for PIP which she can use to pay for support. I hope that you have lasting Power of Attorney - if not try to organise that asap. It makes everything easier. It’s all a lot to do but sadly dementia only progresses in one direction.

Thank you for getting back to me. Mum is still under memory clinic. She is now on her 2nd medication as the first one hasn’t worked the side effects are too much. I have managed to get POA sorted.
I also have a care team that spends 30 mins morning an evening.
I guess I am wanting someone to tell me it’s going to be okay an everything will be back to normal.
It’s just when she has bad episodes I’m struggling to deal with them. Like tonight mum has phoned me 17 times in 20 mins asking the same thing. By the 10th call I losing it which then stresses her also.

 

[update2020]

Thank you for getting back to me. Mum is still under memory clinic. She is now on her 2nd medication as the first one hasn’t worked the side effects are too much. I have managed to get POA sorted.
I also have a care team that spends 30 mins morning an evening.
I guess I am wanting someone to tell me it’s going to be okay an everything will be back to normal.
It’s just when she has bad episodes I’m struggling to deal with them. Like tonight mum has phoned me 17 times in 20 mins asking the same thing. By the 10th call I losing it which then stresses her also.

Oh I’m so sorry, it’s really very hard. You’ve done really well with everything that you have put in place. You probably are not going to be able to stop your mum calling and I expect that you know this in your heart. Maybe keep your phone on silent or switch it off at least sometimes and then ring her when it’s convenient for you to check on her?

Unfortunately the Alzheimer’s is likely to progress and your mum will need more care. Just as an example - my husband needed 24/7 care within a year of being diagnosed although he probably could have been diagnosed 5 years earlier when he stopped working (he was early 50s) and he eventually died at 65 around 7 years after his official diagnosis.

So it’s hard to say when your mum will need more care as everyone is diagnosed at different stages, but (as you already know) things won’t return to normal. There is no cure for Alzheimer’s and the medications don’t return people to normal. She will eventually probably forget how to use her phone but leaving her alone 23 hours a day will also become more difficult too.

I’m so sorry that it’s such a difficult road for you all. It’s not much help to know that we all feel at our wits end - it’s difficult being in the middle between parents and children.

Also do follow up on some of the links that GrannieG posted above as you may be able to find more support local to your mum. xxxx

 

[Familymatters2022]

Oh I’m so sorry, it’s really very hard. You’ve done really well with everything that you have put in place. You probably are not going to be able to stop your mum calling and I expect that you know this in your heart. Maybe keep your phone on silent or switch it off at least sometimes and then ring her when it’s convenient for you to check on her?

Unfortunately the Alzheimer’s is likely to progress and your mum will need more care. Just as an example - my husband needed 24/7 care within a year of being diagnosed although he probably could have been diagnosed 5 years earlier when he stopped working (he was early 50s) and he eventually died at 65 around 7 years after his official diagnosis.

So it’s hard to say when your mum will need more care as everyone is diagnosed at different stages, but (as you already know) things won’t return to normal. There is no cure for Alzheimer’s and the medications don’t return people to normal. She will eventually probably forget how to use her phone but leaving her alone 23 hours a day will also become more difficult too.

I’m so sorry that it’s such a difficult road for you all. It’s not much help to know that we all feel at our wits end - it’s difficult being in the middle between parents and children.

Also do follow up on some of the links that GrannieG posted above as you may be able to find more support local to your mum. xxxx

Thank you so much.
I am so sorry for your loss. How are you doing?
I think mum has had this for a long time and I just haven’t noticed.
Like forgetting to pick me up from school.
I plan to get mum into some day care for two days a week. They do activities and feed her it’s 10/2 an I can work without worry.
Everyone on here is just amazing.
I thank you so much for telling me your story ❤️

 

[fayelouise03]

Hello

I thought I would reply to you as our situations are somewhat similar. I've only just joined today as I just don't really feel I have many friends to talk to about it - or I don't think they understand. I'm 29, pregnant with my 2nd baby at the moment, my son is 16 months old. I think I am finding it harder having young children. My mum is 56 years old. Only very recently diagnosed, but has been rapidly deteriorating for a long time now, it has been very difficult getting a diagnosis. My mum lives with my stepdad and 13 year old brother, my heart is breaking for both of them. She is forgetting a lot of things now, struggles to string a sentence together or use technology. It really scares me how quickly she is getting worse and how bad she will be by this time next year, or even in a few months time. She recently asked what COVID was as she kept hearing it on the news. She struggles with names etc now too.

If you ever wanted to chat, I would really like talking to somebody who just gets it. It can feel very lonely at times xx

 

[Xhanlbxx]

Hello

I thought I would reply to you as our situations are somewhat similar. I've only just joined today as I just don't really feel I have many friends to talk to about it - or I don't think they understand. I'm 29, pregnant with my 2nd baby at the moment, my son is 16 months old. I think I am finding it harder having young children. My mum is 56 years old. Only very recently diagnosed, but has been rapidly deteriorating for a long time now, it has been very difficult getting a diagnosis. My mum lives with my stepdad and 13 year old brother, my heart is breaking for both of them. She is forgetting a lot of things now, struggles to string a sentence together or use technology. It really scares me how quickly she is getting worse and how bad she will be by this time next year, or even in a few months time. She recently asked what COVID was as she kept hearing it on the news. She struggles with names etc now too.

If you ever wanted to chat, I would really like talking to somebody who just gets it. It can feel very lonely at times xx

Hiya ,

I am so sorry you have to go through this - my dad was 57 when he was diagnosed and he is 60 now and with early onset it seems to decline quicker .

I am 32 and I really struggle with each change down the road so I cannot imagine how your younger sibling feels , my heart really goes out to you all.

All I can say is live for today and enjoy your mother and what you do have because with this disease we already grieve each loss everytime something changes and it is horrible .

As things change you will adapt and then another change will happen but believe me you will realise how strong you are throughout - if you ever need to chat I’m here xx

 

[fayelouise03]

Hello!

Thank you so much for your reply. It was really kind and lovely to read.

I have read that with early onset it seems to progress quicker and I've felt that is what's happening with mum. Do you mind me asking what sort of symptoms you're having with your dad now and how this had changed over the past three years?

Mum was originally diagnosed with anxiety a year ago, but we knew there was no way it could be that! Her symptoms were too severe. Although I know it will get so much worse yet. Even the last few weeks I've noticed her getting worse. It's like she can't remember most words in sentences and can't use phones etc now. Also getting names wrong - as in pronouncing them differently?

Already she feels like a different person, and it does scare me what we still have to come xx

 

[Xhanlbxx]

Hiya ,

Yeh unfortunately it does , no one knows why either.

Dad was exactly the same he was off work for two years with stress prior to his diagnosis - he had the test the first time and they couldn’t see enough to diagnose but then in 2018 they could .

He started with little things like not being able to lock the door , answer the phone , make a cup of tea etc but he would still go out for walks.

It eventually got to the point where he couldn’t go for walks because he started falling and hurting himself .

My advice is to do things while you can , if there is any holidays etc do it - we went to New York in 2019 and 2020 and I’m so glad we did .

Dad seemed to lose cognitive skills rather than experiencing not knowing who people are but very active but everyone’s journeys are different and all ways are heartbreaking .

I also wish I spent more time with my dad when he was more mobile /aware etc but I kind of stayed away more because I didn’t want to accept it so my advice would be to try not to do that .

 

[Xhanlbxx]

Hello!

Thank you so much for your reply. It was really kind and lovely to read.

I have read that with early onset it seems to progress quicker and I've felt that is what's happening with mum. Do you mind me asking what sort of symptoms you're having with your dad now and how this had changed over the past three years?

Mum was originally diagnosed with anxiety a year ago, but we knew there was no way it could be that! Her symptoms were too severe. Although I know it will get so much worse yet. Even the last few weeks I've noticed her getting worse. It's like she can't remember most words in sentences and can't use phones etc now. Also getting names wrong - as in pronouncing them differently?

Already she feels like a different person, and it does scare me what we still have to come xx

Sorry I also forgot to say if it has suddenly got worse for her I would definitely get her checked out for UTI as this can accelerate symptoms in dementia and make it seem worse.

With dad now he needs help with everything and his mobility has nearlly gone - it is sad but he still smiles with us and we try to have a laugh x

 

[fayelouise03]

Hiya ,

Yeh unfortunately it does , no one knows why either.

Dad was exactly the same he was off work for two years with stress prior to his diagnosis - he had the test the first time and they couldn’t see enough to diagnose but then in 2018 they could .

He started with little things like not being able to lock the door , answer the phone , make a cup of tea etc but he would still go out for walks.

It eventually got to the point where he couldn’t go for walks because he started falling and hurting himself .

My advice is to do things while you can , if there is any holidays etc do it - we went to New York in 2019 and 2020 and I’m so glad we did .

Dad seemed to lose cognitive skills rather than experiencing not knowing who people are but very active but everyone’s journeys are different and all ways are heartbreaking .

I also wish I spent more time with my dad when he was more mobile /aware etc but I kind of stayed away more because I didn’t want to accept it so my advice would be to try not to do that .

Morning

The biggest difference in Mum is her speech. I would say probably 6/10 words of each sentence she forgets/gets wrong. So knowing what she is trying to say is getting increasingly difficult, I never know whether to wait for her to say it, or try and help finish her sentences for her. She can make a cup of tea/make a sandwich, but nothing more than that (used to cook a lot). Can't use her bank card, phone, laptop, TV etc. She will sometimes take the dog out for a walk. We struggle a lot to get her to go out in general. She's very self-conscious and aware that her speech is failing her so worries about having to interact with anyone. She recently said she doesn't want us to go over, but I am hoping to go this weekend. I would love to go away with her but I don't know how to encourage her to leave the house. It is definitely Mum's cognitive skills more so right now. I can tell she hasn't grasped that I am having another baby, we got my son a 'big brother' t-shirt and she didn't understand.

Thanks for the advice. To be honest it feels easier to stay away. But I know I will be filled with regret. So I am trying to get over as much as I can now.

How long do you think from him getting his diagnosis until he was then struggling with mobility? I appreciate it'll affect everyone differently, I just like to know what we could possibly be facing.

Also, does he have a full time carer? Sorry for all of the questions I hope you don't mind. Don't feel you have to respond I know I am asking a lot haha.

Can I ask if your dad is on medication? We've been really let down by all medical professionals, I've had to make a lot of complaints and go through different channels to push for all of this. At her appointment from her MRI when she was diagnosed, they said they wouldn't be offering medication but would refer her to a specialist in Sheffield (nowhere near us but we don't mind if it'll help). But this appointment isn't until the end of November. It's like they've just left us to it and we don't really know what to do. She does take anxiety medication but nothing to help with the Alzheimer's x

 

[update2020]

Morning

The biggest difference in Mum is her speech. I would say probably 6/10 words of each sentence she forgets/gets wrong. So knowing what she is trying to say is getting increasingly difficult, I never know whether to wait for her to say it, or try and help finish her sentences for her. She can make a cup of tea/make a sandwich, but nothing more than that (used to cook a lot). Can't use her bank card, phone, laptop, TV etc. She will sometimes take the dog out for a walk. We struggle a lot to get her to go out in general. She's very self-conscious and aware that her speech is failing her so worries about having to interact with anyone. She recently said she doesn't want us to go over, but I am hoping to go this weekend. I would love to go away with her but I don't know how to encourage her to leave the house. It is definitely Mum's cognitive skills more so right now. I can tell she hasn't grasped that I am having another baby, we got my son a 'big brother' t-shirt and she didn't understand.

Thanks for the advice. To be honest it feels easier to stay away. But I know I will be filled with regret. So I am trying to get over as much as I can now.

How long do you think from him getting his diagnosis until he was then struggling with mobility? I appreciate it'll affect everyone differently, I just like to know what we could possibly be facing.

Also, does he have a full time carer? Sorry for all of the questions I hope you don't mind. Don't feel you have to respond I know I am asking a lot haha.

Can I ask if your dad is on medication? We've been really let down by all medical professionals, I've had to make a lot of complaints and go through different channels to push for all of this. At her appointment from her MRI when she was diagnosed, they said they wouldn't be offering medication but would refer her to a specialist in Sheffield (nowhere near us but we don't mind if it'll help). But this appointment isn't until the end of November. It's like they've just left us to it and we don't really know what to do. She does take anxiety medication but nothing to help with the Alzheimer's x

I believe that Sheffield has a good specialist centre so I’d take it as a good sign that they are not rushing to medicate locally but referring her to a more specialist place. It’s hard to get the medication right for Alzheimer’s and mistakes can be very costly in terms of negative side effects. So it’s frustrating across the NHS that services are slow (underfunded?) but I’d think it hopefully worth the wait.

As for timescale - everyone is different / I would say my husband was at your mum’s stage in c 2010-12 (when he was early/mid 50s), was officially diagnosed and began medication 2014, assessed as needing 24/7 care 2015, moved to care home and sectioned late 2019, died 2021 aged 65. He never really lost mobility although it was drastically impaired by medication in the last two years.

Your mum/dad could be quite different though.

It can be a hard road but I wouldn’t worry about taking things slowly, and try to enjoy as much as possible atm.

 

[canary]

Hi @fayelouise03

My husband is in his 60s and our children are in their 30s, so not the same relationship, but sort of similar.

Im afraid that it is very common for people to leave the memory clinic and be just left to get on with it. I got a fist-full of leaflets, but many do not even have that.

I noticed that your mum had been tried with Alzheimers medication (I assume donepezil, or similar), but she had horrible side-effects and now is being referred to a specialist in Sheffield. I am wondering whether the memory clinic is thinking that perhaps it isnt Alzheimers and is, in fact, something like semantic variant Frontotemporal Dementia - the main symptom of which is loss of language. If this is indeed what the doctor is thinking, then this would explain the reluctance to prescribe medication as meds for Alzheimers dont work with other forms of dementia.

I would hold fire until the appointment in September. I know it is a way away and your mum is showing more and more symptoms, but you may well be able to get advice on how to deal with them on here. Symptoms often cross different types of dementia and how you deal with them is the same in just about every type.
xx

 

[Xhanlbxx]

Morning

The biggest difference in Mum is her speech. I would say probably 6/10 words of each sentence she forgets/gets wrong. So knowing what she is trying to say is getting increasingly difficult, I never know whether to wait for her to say it, or try and help finish her sentences for her. She can make a cup of tea/make a sandwich, but nothing more than that (used to cook a lot). Can't use her bank card, phone, laptop, TV etc. She will sometimes take the dog out for a walk. We struggle a lot to get her to go out in general. She's very self-conscious and aware that her speech is failing her so worries about having to interact with anyone. She recently said she doesn't want us to go over, but I am hoping to go this weekend. I would love to go away with her but I don't know how to encourage her to leave the house. It is definitely Mum's cognitive skills more so right now. I can tell she hasn't grasped that I am having another baby, we got my son a 'big brother' t-shirt and she didn't understand.

Thanks for the advice. To be honest it feels easier to stay away. But I know I will be filled with regret. So I am trying to get over as much as I can now.

How long do you think from him getting his diagnosis until he was then struggling with mobility? I appreciate it'll affect everyone differently, I just like to know what we could possibly be facing.

Also, does he have a full time carer? Sorry for all of the questions I hope you don't mind. Don't feel you have to respond I know I am asking a lot haha.

Can I ask if your dad is on medication? We've been really let down by all medical professionals, I've had to make a lot of complaints and go through different channels to push for all of this. At her appointment from her MRI when she was diagnosed, they said they wouldn't be offering medication but would refer her to a specialist in Sheffield (nowhere near us but we don't mind if it'll help). But this appointment isn't until the end of November. It's like they've just left us to it and we don't really know what to do. She does take anxiety medication but nothing to help with the Alzheimer's x

Hiya ,

So from diagnosis in 2018 until now yes a lot has changed which is common in early onset Alzheimer’s but like I said before everyone’s journey is not always the same .

There is people on here who were diagnosed young and it progressed slower , that is the unfortunate thing you cannot put a time limit on it so the best thing to do is live in the now and do what you can while you can do it .

He is at the stage now that he is going to have full time care in the day but at home which we had to fight for the help funding .

It is definitely easier to stay away but eventually she will need more help so it would probably affect you more if you have stayed away if that makes sense.

With Alzheimer’s it all depends on what part of the brain is affected first like with dad it was the cognitive side but with my elderly nan she is fine cognitive wise but the mental aspect of what year we are in etc reverts back years .

In regards to medication it usually is the memory clinic that diagnose and then I think they offer a drug to slow down the progression in alot of cases , have they confirmed why they haven’t offered it ?

 

[update2020]

Hiya ,

So from diagnosis in 2018 until now yes a lot has changed which is common in early onset Alzheimer’s but like I said before everyone’s journey is not always the same .

There is people on here who were diagnosed young and it progressed slower , that is the unfortunate thing you cannot put a time limit on it so the best thing to do is live in the now and do what you can while you can do it .

He is at the stage now that he is going to have full time care in the day but at home which we had to fight for the help funding but we had been messed around a lot by social services !

It is definitely easier to stay away but eventually she will need more help so it would probably affect you more if you have stayed away if that makes sense.

With Alzheimer’s it all depends on what part of the brain is affected first like with dad it was the cognitive side but with my elderly nan she is fine cognitive wise but the mental aspect of what year we are in etc reverts back years .

In regards to medication it usually is the memory clinic that diagnose and then I think they offer a drug to slow down the progression in alot of cases , have they confirmed why they haven’t offered it ?

So glad you got that. We had full time day care at home for a number of years and I only wish we’d been able to keep it going longer. None of it was arranged by social services though / so that’s different. X

 

[Xhanlbxx]

So glad you got that. We had full time day care at home for a number of years and I only wish we’d been able to keep it going longer. None of it was arranged by social services though / so that’s different.

Thank you so much xx

 

[fayelouise03]

Hiya ,

So from diagnosis in 2018 until now yes a lot has changed which is common in early onset Alzheimer’s but like I said before everyone’s journey is not always the same .

There is people on here who were diagnosed young and it progressed slower , that is the unfortunate thing you cannot put a time limit on it so the best thing to do is live in the now and do what you can while you can do it .

He is at the stage now that he is going to have full time care in the day but at home which we had to fight for the help funding .

It is definitely easier to stay away but eventually she will need more help so it would probably affect you more if you have stayed away if that makes sense.

With Alzheimer’s it all depends on what part of the brain is affected first like with dad it was the cognitive side but with my elderly nan she is fine cognitive wise but the mental aspect of what year we are in etc reverts back years .

In regards to medication it usually is the memory clinic that diagnose and then I think they offer a drug to slow down the progression in alot of cases , have they confirmed why they haven’t offered it ?

Morning ?

Completely understand everyone is so different. Mum is deteriorating quickly. When I think of her a year ago to now, the change is crazy. Her speech definitely seems to be the biggest change so far, and that is now her understanding and coordination etc so can't really grasp what you're saying and can't write. But doesn't so far have mobility issues. I wish you could just know what to expect. I would prefer to have some idea. So I know the part of her brain that has mostly been affected right now is the part that controls speech etc.

I'm so sorry your dad has got to the point of needing full care in the day. I'm glad you've been able to sort it. It's horrible how much of a battle everything is.

So she has the diagnosis appointment after her MRI, they confirmed she had it but said right now they wouldn't offer medication. Her next appointment isn't until 28th November. My stepdad has tried to bring it forward but hasn't got anywhere. Very much feels like we've been left on our own.

Xx

 

[fayelouise03]

Hi @fayelouise03

My husband is in his 60s and our children are in their 30s, so not the same relationship, but sort of similar.

Im afraid that it is very common for people to leave the memory clinic and be just left to get on with it. I got a fist-full of leaflets, but many do not even have that.

I noticed that your mum had been tried with Alzheimers medication (I assume donepezil, or similar), but she had horrible side-effects and now is being referred to a specialist in Sheffield. I am wondering whether the memory clinic is thinking that perhaps it isnt Alzheimers and is, in fact, something like semantic variant Frontotemporal Dementia - the main symptom of which is loss of language. If this is indeed what the doctor is thinking, then this would explain the reluctance to prescribe medication as meds for Alzheimers dont work with other forms of dementia.

I would hold fire until the appointment in September. I know it is a way away and your mum is showing more and more symptoms, but you may well be able to get advice on how to deal with them on here. Symptoms often cross different types of dementia and how you deal with them is the same in just about every type.
xx

Hello! Thanks for your message. Sorry to hear about your husband, so hard on a family ?

So Mum hasn't actually had any Alzheimer’s medication at all. She was originally dismissed as having anxiety, they have said to carry on taking those to take the edge off. But that's it. But yes y
ou sound like you might be onto something there, it is her language/speech that has massively changed. They just confirmed from the MRI it was Alzheimers and hopefully at this next appointment we will know more- though not until November and they've said there's no way to bring it forward but we will keep on trying.

Appreciate your message xx

 

[Xhanlbxx]

Morning ?

Completely understand everyone is so different. Mum is deteriorating quickly. When I think of her a year ago to now, the change is crazy. Her speech definitely seems to be the biggest change so far, and that is now her understanding and coordination etc so can't really grasp what you're saying and can't write. But doesn't so far have mobility issues. I wish you could just know what to expect. I would prefer to have some idea. So I know the part of her brain that has mostly been affected right now is the part that controls speech etc.

I'm so sorry your dad has got to the point of needing full care in the day. I'm glad you've been able to sort it. It's horrible how much of a battle everything is.

So she has the diagnosis appointment after her MRI, they confirmed she had it but said right now they wouldn't offer medication. Her next appointment isn't until 28th November. My stepdad has tried to bring it forward but hasn't got anywhere. Very much feels like we've been left on our own.

Xx

It was very similar for us where at the early stages they diagnosed it as stress because the decline was not a decline where Alzheimer’s could be diagnosed but after a couple of years following the memory test they diagnosed it.

It is the most shocking diagnosis ever because I was actually there and you just think this is it and for someone who still understands it was the same for my dad because we never used to associate it with young age.

Did you ask them why they have diagnosed but not provided medication ?