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Anyone with young children also supporting a mum with alzheimers?

(36 Posts)
sadiemcgradie Fri 13-Jan-12 21:14:47

I hardly ever visit mumsnet but I can't seem to find anyone in my and my sister's situation. We both have young children (mine are 2 and 5, my sister's are 5 and 10). Our mum was diagnosed with alzheimers and vascular dementia in june 2010. She lives 60 miles away. We spend the day with her every tuesday, thursday and we stay with her every weekend. We organise all her finances, hospital visits, social life, clothes, washing etc. We have a brilliant system and me and Nicki both do 50/50 but it's the prospect of life being like this and getting more intense for the next 5-10 years, supposedly the best years of our lives, that is the killer.

Obviously there is always someone else who has a bigger burden so I don't mean to complain but I do sometimes feel very isolated and depressed by the added responsibility.

We have tried to get her to move near to us so many times - she won't move. You can't reason with someone with dementia either, it's not her fault. Obviously we could get care in but she doesn't have any physical problems and it would ruin our good relationship with her.

Anyway - just a shout out I guess - and wondering if there's anyone else out there in mumsnet land with a siimilar situation.

MordechaiVanunu Fri 13-Jan-12 22:29:35

Hi Sadie, I have no experience of this, but didn't want it to go unanswered, so I'm bumping it for you.

Hope someone can help.

Beamur Fri 13-Jan-12 22:34:58

Hi Sadie - I think I may have this situation on the horizon. My Mum has had memory problems for a decade but recently they have changed and worsened. She's just had a full dementia screen and we're waiting for the clinic to contact her for an appointment, but she saw a GP and he commented that the MRI scan had picked up signs of ischemia and mentioned vasular dementia in passing...
Luckily my Mum lives about 3 miles away - having moved closer a year or so ago, but I would say that whilst she was totally up for moving - she found it incredibly hard to adjust to a new house, new routines and so on.
The prospect of her perhaps having dementia and what that might mean for her and for me is pretty bleak. I'm an only child and my Mum is divorced, so I'm her only real support.

OlympicEater Fri 13-Jan-12 22:40:33

No family experience of this but I work in a residential care setting that has some dementia sufferers.

I do think that the distance is probably a massive issue for you and your dsis. Would your Mum consider moving closer to one of you (not sure if she is in the middle of both of you or you and your sister live in the same area) to save a 2 hour round trip.

Have you sought assistance from Social Services? They may be able to put in place a care package to support your Mum - it's not just help with physical things, but someone to check that she is eating properly or to take her shopping could mean that you could cut down on the frequency of your trips.

TwoIfBySea Fri 13-Jan-12 22:40:59

Sadie, there will be Carers organisations in your area. Please get in touch with them and they'll offer you brilliant advice and help and a much needed listening ear. Google carers then your area and it should come up with something. If you are in the Lothians then I can point you in the right direction.

I'm going through a battle with the social worker at the moment regarding my mother's care and her future. Unfortunately I have learned that you cannot rely on them at all (and many have this experience) and as an only child it has been the darkest time of my life. However the carers organisations will give you impartial information.

There may be tough choices ahead. Have you sorted out Power of Attorney, is she at the stage where guardianship might be the answer. This might sound tough but try not to move her in with one of you. I did that and it was a disaster, especially as the social worker completely assumed what I was able to offer as a carer when my mother took ill. You are letting no one down if you find her a really nice care home or sheltered housing unit where she can be looked after and where you and your sister can continue your hard work knowing your mother's needs are being met.

Just so you know, 90% of carers end up suffering from a mental illness, 80% from a physical. It is demanding and you are right to realise you are feeling the pressure. It is awful and unless you have been through it or are going through it it is hard to understand but there is help out there.

fruitshootsandheavesupafurball Fri 13-Jan-12 22:49:53

Hi. Not my mum but my dad has Alzheimers dementia. He is at the advanced stage now and doesn't recognise me or my sister anymore.
My DC's haven't visited for quite a while. There is no point. I want them to remember him as he was when they were little, it is too upsetting to see him now. But they were around him in the early stages.
Me and my sister are his only visitors. My dad's siblings won't visit.

It is hard. My dad was stubborn too. The only reason he finally went into a carehome was simply because he was becoming a danger to himself, if he had been fully aware he would still have been too stubborn to move. I did try to have him move in with us but we were unable to move to a house that was big enough.

I STRONGLY suggest you get Power of Attorney for you mum if you haven't already and also do try to get her to sort out some of her things, if only to see if there are any special photo's memories that will stay with her as her condition worsens.

It is good you have your sister to help too. Mine has left it all to me, she visits but I have done everything else and sometimes I just wish she would help with legal, financial and clothing issues or with sorting his house out, it's taken me & Dh 18 months so far and we are nowhere near done sorting. (Dsis lives alone 15 minutes from his house, she is just ignoring the house and other stuff and hoping it will go away, which it will eventually as I am doing it!)

I am so sorry this is happening to you all. Hopefully you and the dc's will have many more years with her before her condition get into the advanced stages.

fruitshootsandheavesupafurball Fri 13-Jan-12 22:54:14

I also agree with TwoIfByThe Sea ...Social Services were hopeless in dads case, he was classed as urgent but I still got NO help for a year after I first phoned them.

In the end it became an emergency. He was actually kicked out of his first carehome as they couldn't cope with this behaviour! We had nowhere to put him and they did then at last arrange for a more secure home that could take him immediately.

The Alzheimer's Society are really good for advice and to talk to other people in similar situations.

sadiemcgradie Fri 13-Jan-12 23:01:07

Thank you thank you to all who replied.

Beamur: it's so good that you have managed to move your mum nearer to you. There is support out there - the alzheimers society website forum talking point is very useful.

Olympic eater: 'I do think that the distance is probably a massive issue for you and your dsis' - absolutely right. My and my sister both live 60 miles away in brighton. To get to mum's is practically all motorway. Problem is she's living in blissful ignorance and although she's fortunate in that she has a good pension so we've been able to organise a cleaning lady (to talk to her mainly) and gardener (ditto) she wouldn't accept any other help because she's very far from being a little old lady even though she's 81.

Twoif/Fruitshoot: thanks. We have power of attorney and we're so lucky to have each other - that is the only real silver lining in our sitaution. I really feel for carers whose siblings aren't organised/mature enough to pull their weight. And it's the many more years with her Fruitshoot that in a way I dread - becuase this is what we will be doing with her for years and years, and that's before she gets any worse.

The only way we could get her to move here is if we were honest and said you have alzheimers and you will get a lot worse. We can't face it. She would be so angry and so disbelieivng.

Beamur Sun 15-Jan-12 18:41:19

So, you and your sister know she is ill, but she doesn't?

TwoIfBySea Sun 15-Jan-12 20:27:26

They don't often want to admit it to themselves Beamur, some actually don't realise what is happening. Any form of dementia affects the whole family, not just the person whose mind is being robbed.

CMOTDibbler Sun 15-Jan-12 20:39:22

My parents are both very frail, and my mum had a CT scan last week that showed she had sever atrophy of her temporal lobes - which explains her speech and memory problems. I live 80 miles away, work ft, and have a 5 year old. Tis a nightmare tbh, and I can't offer regular hands on help, so feel very, very guilty.

Mum and Dad sat there last week and heard the Dr explain (very gently) that mum had significant issues, that it was dementia etc, and both have now swept that under the carpet and are ignoring it hmm

shesparkles Sun 15-Jan-12 20:41:29

Sadie, I've been in precisely your position, sadly mum died 2 years ago. Please PM me if you want to ask ANYTHING-I can possibly pass on my experience

ssd Sun 15-Jan-12 20:48:31

sadie, it is very very hard, especially if
A. YOUR MUM WONT ACCEPT HELP
B. YOU ARE THE ONLY SIBLING WHO DOES ANYTHING TO HELP HER

sorry for caps!!

I'm glad you have your sister, but you really need to move her closed, this is a necessity, can you get her dr to talk to her?

GentleOtter Sun 15-Jan-12 21:10:36

I feel for you, sadie.

My eldest son, dh and I were in this situation with my late father who had undiagnosed vascular dementia and TIA's.

We had days when dad was lucid, other days when he was very unpredictable. We encouraged him to move in with us as he too lived 60 miles away - 120 miles round trip.

We were home educating our dd who has various special needs then we had a new baby. I will admit that it was a difficult time trying to tend to everybody's needs and run the farm.

Social work were hellish. I don't even want to talk about how awful they were.

We found huge support from the Princess Royal Trust for Carers plus a super dementia/ alzheimer's nurse once dad was formally diagnosed and were able to find stockists of incontinence pads, help when dad became violent, aggressive or depressed, we got into a good routine and sort of wandered round like zombies but everyone was well cared for even through a harsh winter and power cuts.

Does your mum refuse to accept that she has alzheimers?

Would she consider going to visit good residential homes near you?

It is an awful lot to take on and the carer is often the last to be cared for. you will need help and support. The Princess Royal Trust can help you discuss all your options and offer support for you and your mum.

If there is anything i have forgotten or can help you with, please pm me.

Beamur Sun 15-Jan-12 21:39:54

My Mum has been dealing with chemo related memory loss for some time, but was in denial about that for quite a while.
She knows all is not as it should be now, and there have been issues where usual 'common sense' no longer applies and I do wonder how well she will take on any diagnosis of problems.
Whilst she has not had any formal diagnosis yet, we have already put in motion things like ensuring I'm a named person on insurance documents etc as she gets very confused when she has to ring up and query anything - it would be easier for her for me to do that kind of thing. We are also going to get advice on power of attorney too.

TwoIfBySea Tue 17-Jan-12 16:22:00

It is disappointing to read how many people have had a hard time from the social workers. I just thought it was either me or she was a particularly bossy person.

Wonder what can be done though?

I'll say one thing, after contacting a Carer's advocate she was furious with me. She liked to tell me what happened and when and not letting me see any of the assessments.

Still does.

On dealing with other departments not one said anything positive about social workers in general. Just awful.

sadiemcgradie Wed 18-Jan-12 12:29:19

Been away for a while, thought this thread has died - so thank you so much to all who replied. It's really appreciated. Thanks shesparkles for offer of help too.

It's like going round in circles talking about dementia.

The reason beamur she doesn't know she has alzheimers is because when we told her she had vascular dementia she got terribly upset and agitated (agitation is one of the worst symptoms of dementia and to be headed off at the pass whenever possible). Someone once said on the talking point forum that you tell people with dementia what they need to know and no more. If we felt it would make her move near us we would tell her, but I'm not convinced. It would make her hate us for a while and I don't think she would believe it anyway. Or indeed remember it. The doctors I have seen all say be gentle - be persuasive - back off when the person gets agitated and try again later. Do not try to reason with them.

We do all the paperwork for mum. The latest is I'm trying to work out if someone has cloned her bank card because she's taking huge sums out. Or is she? Try discussing that with her and she just gets angry with me.

Dealing with dementia requires such patience and it's easy to feel bitter. People not in this situation don't realise that the person isn't someone you can just organise - my mum is very proud and she doesn't listen anyway - she never did!

Thanks anyway to all and all the best in all your situations. Caring really is a rite of passage when it includes parents as well as your own kids.

Beamur Wed 18-Jan-12 14:27:00

Thanks for posting Sadie. I can imagine not wanting to accept or face up to this illness. The clinic my Mum has been to are obviously very skilled in using the right words and last time we went came away with them wanting Mum to see the GP and get some treatment for depression - as they picked up on symptoms plus if you have depression, it interferes with memory too and can make the assessment of that less straightforward (that's my understanding of what they were saying anyway) but all this was said without once saying DEPRESSION which I thought was interesting.
What you say already chimes with me, I tend not to tell Mum more than she needs to know and often at the last possible moment too - otherwise I am just repeating myself and I get irritated - which isn't fair on her as it's not deliberate that she doesn't remember. I already do most of my Mums paperwork and we have a lot of things in joint names anyway as we own a house together (which she lives in) and she is happy for me to do that for her.
From what has been said by the GP, there is vascular dementia, although I don't know yet if/how that will progress, she has been treated for a while for high blood pressure and I don't know if it is linked or something else.

sadiemcgradie Wed 18-Jan-12 21:57:45

Hi Beamur

TWo books I'd recommend are Still Alice by Lisa Genoa (novel written in the third person from the pov of the a 50 year old woman who has early onset alzheimers - was a New York Times bestseller - that really chimed with me) and also Contented Dementia by Oliver James. The first has been ratified by the US alz society, the second slated by the UK alz society because James believes in not being upfront with the sufferer and colluding in their beliefs. His book is also aimed I think at people with moderate to severe dementia whereas many people (although not the majority) are diagnosed at the mild to moderate stage. Having tried both methods I'd say I agree with Oliver James. My mum does not have the intellectual capacity to make reasonable decisions. She is pretty childlike although has lost none of her charm.

Anyway - both are useful books for putting yourself 'in their shoes' which is the hardest thing to do with dementia becuase like you say it's the most frustrating thing to deal with. Not least the repetition! And the mood changes. And the guilt. And the irritation. Etc....

I hope you get the support you need. The talking point forum on the alz society website (www.alzheimers.org.uk) is very useful.

Thanks and good luck...

festiemum Mon 23-Jan-12 13:11:38

Hi all, hi sadie,

I am in a very similar position to you; three young children, mum 60 miles away, regular falls, incontinence and finally a diagnosis of vascular dementia recently. I also have a brother, with no kids who lives around the corner, but can't help because he "works full time". Tbh, I've always been the sorter in the family, iykwim.

Until recently, she was at home in sheltered accom, 3 carers a day, meals on wheels, and vaguely coping (albeit with regular falls) and then before Christmas she fell and broke her arm, and has ended up temporarily in a care home. Realistically, how long before the care home is permenant?

She's another fiercely independent lady. Doesn't know she has dementia; has times when she's very lucid and other times, for example, this weekend, she rang her sister in tears because she was surrounded by pictures of children and didn't know who they were ( my kids - she dotes on them).

Sorry to offload there, but I feel constantly guilty that I'm not doing more (I see her at least twice a week), but not sure what more I can do. It's a horrible, horrible disease, isn't it?

sadiemcgradie Tue 24-Jan-12 21:49:26

Hi festiemum
I am sure you are doing all you can - I think a lot of it is to do with how much energy I have - when I have low energy (which must be something to do with either overstretching or the moon) I find her such a drain on me. When I'm with her on tuesdays, my day with her wtihout kids, and I am raring to go, it's fine - we have some great times. your mum is further down the line than ours. It must be a relief in a way that she is in a care home. Is it one that you can see her living in permanently?
Really important to put your kids first though - hard as that may be at times.
Take care of yourself too...

bunnybunyip Tue 24-Jan-12 22:05:42

Hi all,
I am in a similar position. My mum was diagnosed with vascular dementia aged 60, is now 66 and lives alone about 2 hours drive from me. I have a toddler and a baby. I have a sister who also lives quite a distance away, and I am like you festiemum, in that I am the one in our family that is the sorter.
I am in awe of how much you do for your mums. I only visit about once a month, the kids tend to make mum quite anxious and she obviously wants us to leave so is difficult. Mum has a carer in daily but won't let them do anything. She has become worse recently so we are a bit worried she will need to go into care; she has always refused to move nearer to us but she will have to if she goes into care I think.
I am going tomorrow and I somehow have to persuade her to have a bath, change her clothes and sheets and take her to the dentist. I know it is going to be a hideous day.

cantremember Tue 24-Jan-12 22:11:46

My mum has had Alzheimers for 7 years. It started with mild memory loss 7 years ago, progressed to becoming very agitated 3 or 4 years ago as she tried to fight the illness, for the last year or so she doesn't recognise any of her children or grandchildren. It is so hard. Looking back, I wish that someone had pointed out to me at the early/mid stages of the illness to appreciate whatever memory she still had / whatever conversations she could still hold no matter how broken. She can no longer converse with us or recognise us and her physical capability is worsening, wheelchair, spoon feeding etc. My advice to the OP would be to treasure the current conversations/interaction as unfortunately things will only get worse. Alzheimers is often described as a 'living bereavement'. Too true.

festiemum Thu 26-Jan-12 10:03:02

Thanks sadie - I think if we're talking about something permenant, I would want to shop around a bit iykwim. I'm still not sure what will be decided when they assess her, tbh. She changes from moment to moment. Last visit, she was so lucid, I wondered if we'd got it all wrong! Then she asks me the same question twice in the space of a couple of minutes, and listens to the somewhat elaborate answer twice as if she's never heard it before.

Hope your day of sorting your mum was ok, bunny. I know that feeling of dread.

How right you are cantre - living bereavement indeed. My dad passed very suddenly in November, and although it was a shock, I think I preferred it to the way my mum is going: losing her piece by piece like this is horrible.

sandyballs Thu 26-Jan-12 10:33:55

How sad that so many of us are in this position.

My mum is 84 and was diagnosed with azheimers about three years ago. Luckily I'm not too far away (10 miles) and can visit regularly but it is still hard as I commute to London for work (long days) and have ten year old twins.

Mum was adamant she didn't want caters coming into her home, she user to get very cross when the subject was raised. She wasn't looking after herself very well though and I eventually found her in bed one sat last summer and I couldn't wake her. AmbulNce was called and she spent three weeks in hospital with dehydration, urine infection etc. I was told by a friend that this was the time to insist on carers and I refused to agree to her release from hospital until this was in place.

They have been briiant, lovely ladies pop in every morning and make mum breKfadt and tea, meals on wheels pop in with lunch then again in eve t make sure she is ok.

I wish we had insisted on this a long time ago, so sadie it's worth looking into even if your mum does resist it and gets angry

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