Bewildered newbie - mum just diagnosed with Alzheimer's

[Jameela]

Hi everyone,

I'm new here, and have come because my mother has just (like last Tuesday) been diagnosed with Alzheimer's. She seems to be deteriorating really fast too. The diagnosis wasn't a surprise - her memory has been getting worse and worse over the last 12-18 months - but it was sad all the same.

I live 2 hours' drive from my mum and am currently having to dash to and from her, while trying to juggle work, my darling 11-month baby boy, and a sick (though on the mend) husband.

Social Services and the community mental health nurse are all involved, and a care agency is going to start going in to my mum once a day to make sure she takes her meds. Whether that is enough, I don't know. She'll have to pay for her care in any event as she has too much in savings.

I have no idea how all this might progress and would really appreciate any help and advice you could all give me.

Best wishes
J

 

[lin1]

Hello Jameela
Welcome to TP
Am sorry to hear about your mum , tho tho you know something is wrong , it still comes as a shock when your fears are confirned. You need time to get through the shock

It seems as tho you have everything in place that you can at the moment . Being a distance carer is not easy. We have many on here who know what thats like.

Have any meds for Alzheimers been orescribed for your mum such as Aricept or Ebixa

You will find a lot of support and advice on here from people who understand

 

[Amber 5]

Hi Jameela,
Sorry to hear about your Mum. It sounds like you have a lot to contend with and I know only too well what it is like to be caring from two hours' drive away, as I used to be in that position with my own mum.

I presume your mum lives alone? Do you have any other family members who live closer to your mum who could help to share the load? At the moment, I would recommend keeping in contact with your mum, the carers and help you have on board and keep re-assessing your mum's situation from time to time. If she tends to go out at all hours, especially in the cold weather, she would be very vulnerable. That is one of the reasons we moved my mum closer to us. If she is living alone, then the main priority is keeping an eye on her and making sure she is safe and eating properly.

You will know when things are changing and need more support. TP is a great place to start and find out lots of useful information and good friends who understand.
Best wishes,
Gill x

 

[BeckyJan]

Hello and welcome to TP.
It is hard to face the initial diagnosis and must be especially difficult with the distance between you and your Mum. You do have services in place and I am sure they will monitor your Mum.

There is the saying 'nothing is more predictable than the unpredictability of dementia'. For that reason none of us can truly advise you about its progression. This is a link to an Alz. Society factsheet which gives some guidance.

http://alzheimers.org.uk/site/scripts/documents_info.php?documentID=133

You may find it helpful to contact your nearest Alz. Society as they may offer local support and advice.

I am sure you will find TP extremely supportive.

 

[northern star]

Hi Jamela
I'm a newbie too. Mum was diagnosed two weeks ago with mild/moderate Alzheimers. she's been showing signs since April this year but we've only just got this disease confirmed. Have been looking on talking point for the last couple of weeks now and everyone seems really understanding and supportive. keep in touch

 

[Jameela]

Hi everyone,

Thanks for all your messages - and apologies in advance for what will be a really long post

I've just spent an awful weekend with my mum. She didn't know where she was, and kept asking why she was in this house, how long she'd lived there etc. (She's lived in that house 14 years.) She also couldn't remember how long ago my dad died (27 years) or what he died of (leukaemia). She didn't know which room in the house was her bedroom, and kept coming into the spare room (where I was sleeping) during the night. She was very bad yesterday, but had improved a bit today, so I felt more or less confident about leaving her to come home - but by the time I got home she was on the phone, asking where she was, why she was in that house, why she was being "kept" there etc. She seemed to think she couldn't leave the house without permission. I also know that on Friday night (before I arrived on Sat) she couldn't work the microwave (that she's had for several years) and asked a neighbour to show her how.

She seems to be getting worse so fast - she's been more and more forgetful over the last 18-24 months, but the last fortnight has seen a huge deterioration. Is it usual for sufferers to nosedive like that?

She's been referred to the memory clinic and will be prescribed Aricept, but I have no idea when that will start.

I'm just really worried that she's now not safe to be left on her own. If she goes outside I'm not sure she'll find her way back inside. Never mind doing things like leaving the electric ring on, or a tap running or something. But the Social Services woman told me that all she needed was someone to go in for 15 minutes every day to make sure she remembered to take her meds (which are mainly blood pressure ones - I know that at her last check she was 175/100, which probably isn't helping!)

How bad does someone have to be to be taken into residential care? I'm not bothered about the money, if I have to pay for it then that's fine. I just want her to be somewhere safe. And, selfishly, I don't want to have to keep rearranging my own life (including having to take unpaid leave from work, and leaving my baby in daycare on days when I'd usually look after him) to try to sort things out for her. I feel guilty about that but it doesn't stop it being true

Thank you all so much for listening - I'm just a bit stressed at the moment! I hate feeling powerless...

EDIT: As a PS, in case anyone is wondering how having an 11-month baby and a mum with AD fit together - Mum had me when she was nearly 40, and I had my little lad when I was 36. Late starters, the pair of us!

 

[glass lady]

Hi

Please believe you are not alone dont depend on social services to tell you what she needs it sounds very much as though your mom would be better in a home and that finding a good one will relieve your fears which are justified. We are able to look after my mom at home at present but even then she requires almost constant supervision. Before we realised she needed more supervision she had managed to burn a hole in the carpet by putting an iron on the carpet and burnt out several kettles by not filling them first. It may well feel awful but she will be safer in a home and if she no longer recognises her own home it would probably just as well in a home.

My aunt who also had alzheimers was thoroughly happy thinking she was at the hairdressers. One thing I will say is it only distresses them to be told of anyones demise to her they are often still alive so it might be better not to remind her of it.

 

[terry999]

Jameela

The rapid deterioation could be due to a physical problem. Urinary Tract infection (UTI) very common in dimentia sufferers esp women. Due to not drinking enough water, holding it in too long and poor hygiene. I'm always amazed at how something wrong down there can have such a big effect on the mind/mood. Get your mum checked out by GP - maybe she is not taking her B.P meds?

Keep a diary so you can note down incidents, this can be important when getting an assesment done by SS. i.e. left fire on, left tap running had a fall etc etc.

I.M.O the more you can show your mum is at risk the more likely she will be offered a place.

If your mum still has capacity getting her to sign a Power of Attorney - one type of PA allows control of finances the newer type allows control of finance and healthcare decisions. Makes life A LOT LESS COMPLICATED.

I found it very useful to get a braclet for my mum (medicalert). She would get lost by wandering often and with this when People found her they could contact me immeditley. There are electronic devices now that enable you to track a person, in fact her carrying a mobile could achieve this - but could you be sure she would always carry it.

Personally I found alot of white lies worked e.g. I didn't tell mum braclet was for if she got lost - just made out it was a present for her. When she asked to see her mum - who was dead for 30 yrs I just said we would go tomorrow.

 

[Margaret W]

Hi Jameela,

Yes it could be a UTI that has brought on the rapid decline, you need to contact her doctor to get a urine test done. But it aint easy when you are 200 miles away. If it is not a UTI then I would feel that your mum is close to needing residential care, if she isn't recognising her home surroundings. You should have a social worker assigned to her who can advise you. If you haven't got one, ask the GP to be allocated one, and get your mum assessed for her ability to cope alone. 24 hours a day. Tell them what you have told us. Don't keep anything back.

Dementia can progess very slowly, and often does, or suddenly. Every person is different. See what your mum's GP can offer, and come back to us.

Love

Margaret

 

[sussexsue]

Hi Jameela

Echo the others that it could well be a UTI causing this rapid change. Equally if your mum is not looking after herself properly, eg having regular meals (other than toast and biscuits) or not drinking enough, this will also add to her confusion.

However, it does sound to me that your mum needs looking after, and it may well be time to consider residential care now rather than waiting for something to happen.

One thing that always strikes me is that Alzheimers is very scary for the person suffering it, and it must be even more scary if they are on their own.

 

[Jameela]

Hi everyone,

I spoke to the CMHN this morning and we're going to get Mum a home visit from her GP, to check on whether there might be something else going on (undiagnosed UTI etc). I'm also going to speak to Social Services at this end to find out about residential/nursing homes locally. I'm sldo going to get the care agency to visit her twice a day, for 30 minutes each time - though that probably can't start until next week.

Thinking about all this in the round, I suspect Mum has been ill for a long time and has just done a superb job of hiding it. About 3 years ago she went through a phase of being very unpleasant to people ("not speaking" to various rellies/neighbours/friends, including me), and suspicious of them too. She reported to the police an alleged sexual assault by a neighbour's son (which I suspect was actually him just going round to ask her to turn her TV down a bit - she's fairly deaf - because it was blasting through the party wall). She also accused two workmen, who were fitting a new front door for her, of stealing a carriage clock off her mantelpiece. It turned up a few days later - in the freezer. Things reached a low point when she decided on the spur of the moment to sell her house and move into a smaller flat. I dropped everything and travelled over to help her tidy it up and clean it (as it was always a mess), do all the paperwork, be there when viewings took place etc. She then changed her mind and was absolutely horrible to me, saying that I was a bully for making her tidy up and sell the house. I took a deep breath and contacted the estate agents to tell them it was all off. But no sooner had I got back home than she was ringing her neighbours, asking them to help her fill in the fixtures fittings and contents form... the GP got involved at that point and everything seemed to calm down, as she was taken off a particular medication that she'd been on (amitryptiline) which the GP thought might be affecting her mental state. She then seemed to be OK for a couple of years, until this year when everything started to gradually go downhill again.

Problem is, she's always been untidy, forgetful, scatty, as long as I've been alive. She's also not always been very nice to people, particularly me (she's had a tragic life and after my dad died, I was often her emotional punchbag). So I and her sister just thought that it was her usual character becoming worse with age. Maybe we misread the symptoms?

Apologies for yet another long post! I guess I need to unburden a bit

 

[sistermillicent]

Do your best to get her into a care home, you owe your small child all the time you can give. DO NOT have her to stay with you, and don't settle for carers going in three times a day etc unless you want to be saddled with being a distance carer which, believe me, is very hard work and takes you away from your family.

You should on no account pay for her to be in a care home yourself.

People on here always say it is a UTI but in my mum's case it was a very sudden major deterioration that was the start of a complete nightmare year, which had nothing to do with any underlying problem, just the progression of the Alzheimers.

 

[Jameela]

Oh dear, it's getting worse. She's rung me 3 times tonight to ask what she's going to have for dinner. She doesn't understand that she has a fridge and a freezer full of food. She's also getting verbally abusive over the phone.

I'm going to start the process of getting Mum into a home. She can't come to live with me and it looks as though she can't stay in her own home, even with carers. It's not like she's getting the benefit of staying in a familiar place, given that she's not even recognising it as her own house!

I have no idea how that works so will have to do a lot of research. A support worker from the local branch of the ASoc has emailed to offer help, so I'll pick her brain.

What a bloody miserable year this is turning out to be - FIL dies of cancer, DH ill, and now this. At least my lovely little boy is here to cheer us all up

 

[Margaret W]

Dear Jameela,

Yes, it is hard work and distressing. How lucky your mum is to have a daughter like you to be looking out for her, and sorting out her life.

Seems like going into care is the only way. It's an awful decision that we all have to make at some point. We hate doing it, but there is no choice if our loved ones are to stay safe. You may find the routine of a care home is actually better for her state of mind.

Good luck with the hunt. You say you aren't concerned about paying for it, but do you realise the level of fees being charged in a bog standard care home? £500 a month is not unusual. And more in a more specialised home. And you could be paying this for many, many years. I don't know your financial circumstances of course, but do think about it.

If your mum has very high blood pressure, and any other health problems, it might be an idea to consider an insurance plan whereby you pay a lump sum up front, and the company pays for her fees for life. The worse her health is right now, the cheaper the Plan. Help The Aged have a special unit that deals with this sort of thing, given them a try. We found them to be very good.

Love and best wishes

Margaret

 

[together]

Have just read your thread and just want to send you a big hug. I can sympathise being a distance from my Mum and Dad (Dad at 90 trying to care for her) and you just feel so helpless. It sounds as tho youre doing a great job tho sorting through all these horrible horrible problems that are thrown at us. Take care of yourself and your little one. My 2 year old (surprise) grand daughter often keeps me going. xx

 

[Jameela]

Hi everyone. Mum's GP says she doesn't think there's any lurking infection anywhere. PLUS Mum seems a bit better over the last 2 days - she's more with it in the evenings, when previously she'd be totally gone. Though she's remembering that she's been told it's AZ, which is making her sad and anxious (but rationally sad and anxious, IYKWIM). I wonder if the fact that she's now taking all her meds properly, and so her blood pressure is stabilising, is helping things.

I'm in the process of getting her EPA registered with the Court of Protection - thank goodness she thought to get one made out all those years ago! Apparently there's a 12-week backlog at the court though, so we'll have to wait a bit for it.

She's not rung me yet today either - after it being around 6 times a day earlier in the week!

Still, it's early days - I won't get too comfortable about it just yet....

 

[Jameela]

I defo spoke too soon - she's just rung me wanting to know where her husband is*. Oh dear....



* he died 27 years ago.

 

[Jameela]

Trying to get Mum into a care home now. She's deteriorated so fast over Xmas, it's scary. I was due to go and see her Boxing Day but I caught flu and got bad sciatica, so even if I'd been able to get out of bed I couldn't have driven.

After last night's truly dire sundowning session (on the phone with her solid from 5pm to 11.30pm - I'm not exaggerating) I got on the phone today to try to start the process of getting her into care, with an emergency respite place to start off with.

I know I'm new to this and so am probably totally wet behind the ears as to what can and cannot be done, but it's been a complete farce. As follows:

- I ring the CPN, she says she'll talk to Social Services as Mum should be viewed as a vulnerable case now and so prioritised. She then comes back to me and says that Social Services won't help a jot, as Mum would be self-funding. Basically, I'm told to go to the CQC website, type in Mum's postcode, and start telephoning at the top of the list.
- I go to the CQC website, type in Mum's postcode - 500 hits. I try to filter out the ones that obviously aren't for elderly/dementia care but am still faced with an impenetrable wall of data.
- I remember that the branch of the Society local to Mum had sent me a care services directory - I find it, breathe sigh of relief, and start ringing those numbers. Most already full. One says has my mum had an assessment of needs, and if so what category of care does she need? Er, I'm not exactly sure. I contact CPN, speak to her colleague, who says she knows the case and that mum needs straightforward residential care.
- YES!! I find a home very near where Mum already lives, who can take her tomorrow if I go over in the morning for a recce and like what I see! Result!
- NOOOOOOO!!! CPN rings back, says her colleague told me wrong, and that Mum needs residential EMI care. Home which could take her can't offer that. Back to square one.
- End day with four homes due to call me back tomorrow. Seems like the admin staff at these places all f*** off home at 4pm. Nice work if you can get it.

In between this Mum is ringing me every half hour, in a rare old state. Doesn't even know how to get to her bedroom.

The CPN did call me back at one point and said that if I was "really struggling", Social Services may be able to offer some additional support. This is the same social worker who, a month ago, sniffily said that Mum didn't need respite care (as was being floated at that time), she just needed someone going in once a day to make sure she was taking her blood pressure medication properly. So forgive me if I don't hold out much hope for help from that source.

It shouldn't be this hard - should it?

I am supposed to be back at work tomorrow, and at some point in the next 20 days my husband is due another operation to remove the remaining part of his thumb (it turned out to be cancer, not just an infection). So I'll be solely responsible for my baby son for at least a month after that - no travelling possible. So we're really up against in in terms of time.

I am pretty appalled at the fact that, because Mum is self-funding, we're basically left to fend for ourselves.

If anyone has any advice on how to navigate all this, I'd be really grateful...

 

[sistermillicent]

Jameela, I have experienced the same thing. The good news is that in the end social services did help, but only once we got mum assessed for continuing care funding, and got it approved. Respite places are so hard to find, but we did get one somewhere nice.

We also had places earmarked only to be told in the end that mum needed an emi nursing home, why didn'[t they say this in the first place?????

In the end I didn't know who was who or what was what, I don't know how I held it together, but my final telephone assault on the cpn or social worker or whoever he was got mum admitted three days later, I told him it was very urgent, and I think he heard the tone in my voice.

The people I found really useful when I finally managed to get hold of them was the local Alzheimers society, so try them.

All the best.
Pippa