in partnership with Red & Yellow Care

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.

mimishimmi Wed 30-Apr-14 21:55:26

My 88 year old grandfather does not have Alzheimer's but as I am his only relative left in my city(still an hour away by train though) and mum can't help him due to her own serious health problems, I will be going into his retirement village that he's just moved into every ten days or so to help him out. He is beginning to show some signs of age related dementia but the truth is that he has always been bad-tempered and manipulative although he managed to keep it under check for a good while. Two years ago it started surfacing again and because of this I won't commit to doing any more than I already have committed to.

porthtowanone Fri 14-Feb-14 09:55:13

Hello ,Both my parents have dementia ,they are relatively young ,both in nursing homes ,its a terrible situation to be in ,my kids have lost their grandparents and also I have lost my parents ,my kids don't visit them often,terrible I know ,but I don't force them ,its their decision completely ,its good to know im not alone in what im going through x

schnoodlemum Fri 08-Mar-13 14:51:08

Hi
this is my first mumsnet post! Just to say I'm living through all the dementia grief right now and my heart goes out to all you guys. I have 3 kids and a mum with end stage dementia. It saddens me that we've never seen another child at the care home. What do others do about taking their kids to see relatives?

whataboutbob Sun 17-Feb-13 21:26:17

Hi All- I am in a similar position, my dad has diabetes, alzheimers and a few other charming conditions. He's a widower, and lives with my brother who has severe depression so at the moment is not able to provide any support for dad, but in an odd way Dad gets something out of brother being there. Even though he's crippled with depression right now and does nothing.
Anyway I've spent the last 2 years like a headless chicken, dealing with one problem or crisis after another, either father or brother related. Finally at my uncle's urging, I started going for counselling and have realised I can't carry everything. I know that although my Dad (who doesn't have much insight) would staunchly refuse to consider a nursing home, when the time comes this will need to be arranged as I cannot care for him till the end of his life. And I hope i won't feel too guilty (and neither should you) as this is a very difficult situation which increasing numbers of us sandwich generationers are in. We do our best but the demands are endless and we also have to think of ourselves, that is not unreasonable/ selfish- and it's only taken me 8 months of counselling to realise that!

BarbJohnson5 Sun 17-Feb-13 20:23:52

My mum has dementia and diabetes, which combined together makes it a tough job as it is. She has had memory issues before being diagnosed, but we didn't know until after the diagnosis. My younger brother and i care for her, but she too is very stubborn and argumentative as well as very untrusting of outsiders, so will not agree to any help from outside. It is very hard on us as we both have families, and young children. Fortunately, we don't live too far from my mum. I've had to pick her up from the police station, city centre etc because she's gotten confused about something or another. It can be quite taxing on us, because of the demand of taking care of her. We now have her attending a club 3 days a week, so we get a break from her wandering the streets and ending up in ridiculous places. Its not the answer, as the clubs won't run forever and as she gets older(she's 88 next wk) it will get worse, and will boil down to us finding a care home for her although she would rather die at the prospects of being in a home. I also feel guilty if she does as i promised her that we wouldn't put her in one. I wish there was more support for her and us, but there isn't much around at the moment, so we soldier on....She is our mother...

Dom2 Fri 08-Feb-13 13:19:59

Message deleted by Mumsnet for breaking our Talk Guidelines. Replies may also be deleted.

makati Fri 01-Feb-13 22:13:14

My mum also has Alzheimer's and vascular dementia and I have just started to look for a residential home for her. She currently lives in sheltered housing but is so lonely, despite me visiting daily and carers three times a day as well. So hard to know where to start-no one seems to want to recommend any where. GP no help, social services not really interested as she will be self funding so just sticking a pin in the long, long list and starting visits.
I don't have any siblings and I think my DH is a bit fed up with it all...

nickyhug Mon 28-Jan-13 13:40:43

Apparently there is going to be an Alzheimer's Show taking place in London, 19-20 April, where there will be loads of people to talk to, questions time sessions with leading experts including doctors, lawyers etc as it can so hard to find someone to talk to or information that useful to your situation.

royguts Tue 25-Sep-12 15:28:21

Message deleted by Mumsnet for breaking our Talk Guidelines. Replies may also be deleted.

sadiemcgradie Mon 27-Feb-12 21:22:08

Thanks can'tremember - just checked this thread today so hadn't seen any posts after mine on the 24th jan. I think you are right. It is a horrible thought. But true. Treasure these relatively good times...

sarah2312 Fri 27-Jan-12 09:46:14

No personal experience but friend's DF has a system from his local health authority, which is a monitoring system. It's to do with the telecare/telehealth that the government are talking about. It has lots of monitoring systems to help with at home care, eg door alarms to prevent him going walk-abouts as well as lots of other things.
He is widowed, but with help from carers, she and her sisters manage to keep him in his comfortable environment (at home) and away from a care home.

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

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.

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.

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.

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...

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 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...

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 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.

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.

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.

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.

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?

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

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