Please or to access all these features

Mental health

Mumsnet hasn't checked the qualifications of anyone posting here. If you have medical concerns, please seek medical attention.

My mum is in a steady mental decline - has anyone else been trhough something similar?

26 replies

TheGoddessBlossom · 26/01/2009 09:02

She has had batteries of tests and a recently series of appts with a psychologist has established it is not a mental thing but a physical thing, and although tests have ruled out stroke, alzheimers etc they still think it is more likely to be an "episode" like a stroke than a mental problem.

But the symptoms remain and they are getting worse. Her short term memory is gone, she cannot read anymore, or do any of the things whe used to (working in a charity shop, drive, antiques fairs, gold). She couldn't tell you the ages of my children. She cannot really talk in sentences anymore, particulary if there is any kind of distraction around her like someone else talking in the next room, a telly or radio on, the kids running around. She doesn't cook anymore, Dad did all of Christmas on his own, food, presents, wrapping, tree, the lot.

She is very sad alot of the time, she knows she is not right, and cannot cope at all with the way my dad has always been, which is quite abrupt, tactless, cruel sometimes, but he is very loving and caring underneath it all and is very upset watching my mum be this way. It has been a gradual thing, but everyone notices it now. She is often in tears about the slightest thing, and it's hard not to get frustrated with her.

I feel desparate for my dad, as it must be impossible to live with - he tells her things fifty times and she still doesn't know, she spends hours walking round the house to find her handbag/glasses/keys/purse, things which he has already located for her and she has forgotten.

So hard to watch this happen. My mum is gone really, although fine in body and physcial health. I miss her so much, we can no longer talk on the phone, no point telling her things as she doesn't really understand.

If anyone else has been through something similar I'd like to hear about it.

OP posts:
TheGoddessBlossom · 26/01/2009 09:03

sorry that should read golf not gold!!

OP posts:
LittleMissNorty · 26/01/2009 09:05

I'm so sorry ....that is so sad.

Have you had a second opinion? How old is your mum?

I have no experience I'm afraid but couldn't ignore your post. I hope you get posts that provide some support and help.

whippet · 26/01/2009 09:08

I haven't been through this, but I just didn't want to leave your post unanswered.

Have you considered contacting one of the charities (Help the Aged? One of the mental health charities - not sure which it would be?) they often have helplines for people going through this sort of thing, and they may be able to give you useful information for coping (both for you and your dad).

Sorry for what you are going through. I think my father has early onset parkinsons, so I fear we will be faced with soemthing similar soon.

TheGoddessBlossom · 26/01/2009 09:10

thankyou for your posts! My mum is 64.

OP posts:
JackBauer · 26/01/2009 09:12

I'm so sorry, my granny went through similar, to the point where grandpa couldnt leave her alone in the house as he wasn't sure what she might do and forget (turning gas on etc)
She eventually went into a nursing home when he admitted he couldnt cope, it was either that or a day carer so she wasn't left alone, he felt so guilty but she picked up a bit and everyone was so much ahppier knowing she was well adn looked after.
I would definately call one of the mental health charities and see what they suggest but maybe think about outside support as well for your father.

Lemontart · 26/01/2009 09:18

I am so sorry. It is very hard to watch someone you love going through this. Your feelings towards your dad and his reaction is what I am experiencing with my mum and her reactions towards her mother.
My gran is going through a similar thing. Hers has now been diagnosed as Alzheimers but previously it was referred to as episodes - memory loss, confusion, difficulty in following a conversation and not coping well with lots going on at once were and still are her main problems..
I live a long way from my gran (350 miles) so find it very upsetting not to be able to speak on the phone - I totally understand how hard that can be. Try writing letters and sending photos with the names, date, age of the kids and place on the back. That can help a lot - she can read and re-read the letter, see the photo and pick it up on good days etc.I know it is more one way conversation then, but at least you are communicating. Helping her to pick up a few pieces and jog the memory when she wants reminding.

Another little thing that helped: I bought her a medium sized whicker basket to go by the front door. In the basket she kept her shoes, keys, handbag, panic button help cord thingie (refused to wear it round her neck). While it is not great to keep keys by the front door, having them all in one place and learning to hang up her coat and put everything in the basket before leaving the hall, saved a lot of stress hunting for stuff.

sorry - not much help, but you do have my empathy and sympathy xx

PenelopePitstops · 26/01/2009 09:18

the goodness, my grandad is just llike this. He had a stroke about 10 years ago and gradually since then has been getting worse, but its only become really noticable in the past five years.

Does your mum have good days and bad days? Some days my grandad is 'all there' and some days he's on a nother planet. Like your mum he also know what's happening, and gets really annoyed with himself. I know what you mean about distractions, my grandad can have a wonderful conversation one on one about the war, but put him in a room with 2 people and he just stands there.

I know my nan finds it hard work living with him. Luckily he still knows where he lives, so he gets out for walks once a day to give my nan a break. She also gets frustrated with him, understandably, but I have to remember she is there all the time with him and it must be so difficult. She also has my mum round the corner who pops in quite often. My grandad aslo goes to a local home one morning a week which is specifically for people with memory loss and they try to work on it, but mostly it is to give carers a break. IS there any chance you could find out about something like this?

Don't forget about things like carers allowance for your dad. You can get the forms online somewhere and perhaps help your dad to see if your mum is 'bad' enough to get the allowance.

I hope you get some more advice, its truly heartbreaking to watch.

mysterymoniker · 26/01/2009 09:18

hope you get some information and support, sorry haven't any to offer personally (well, apart from reading/replying to your post )

it seems cruelly young doesn't it? could you ask social services to assess her/your dad's needs to see if they can offer any practical help?

auntyspan · 26/01/2009 09:18

This sounds just like my dad - he has been diagnosed with Vascular Dementia - basically a serious of tiny strokes killing off parts of the brain. He struggles with language - talking, reading and understanding instructions - and it's heartbreaking to watch. He's still OK to drive but only on familiar routes, he can't map read or navigate. He can't cook and is beginning to lack the co-ordination to dress himself etc. His short term memory is also not great - although it's sometimes difficult to gauge as he can't express himself anymore.

I would get a second opinion to be honest.... obviously I'm no doctor but it does sound like exactly what dad is going through.

TheGoddessBlossom · 26/01/2009 09:39

wow this is amazing thanks so much for all your posts. I think that basket by the front door idea is a great one.

And yes, she is mute when we are in a room of people, or at dinner or out somewhere. Just smiles and laughs in response to any question, regardless of what it is.

I was round there working one day and asked her to read an email out to me - she can still read but it was slow and halting and I suggested that she practice reading out loud every day - she asked if I could bring something round for her to read each day, and I said well you are surrounded by books, pick one up and do it each morning, so she lost interest. She won't do anything to help herself.

Her mum died of alzheimers, but the doctors are sure it isn't that. She has an appt tomorrow with their original consultant, so we will see what comes of that.

She is very depressed that the psychologist has said she can't drive as she now relies on my dad completely, but although she can still drive in theory her reactions would not be good enough, and I certainly would not be comfortable with her driving my DC around.

Her ability to participate in life is waning - if I take her for a walk with my boys and I, at the end of it she just gets in the car, and waits for me to take boys wellies off, coats off, strap them in...it doesn't occur to her to help, just doesn't enter her head. It takes her the whole of the time I am there to visit, to make a cup of tea for me, and even then she asks me 6 times if I take sugar and then brings it to me with none.

We are not a patient family, although my dad is really trying as we all are - I don't thhink we are at outside help for caring for her starge yet, but TBH I don't think it's as far off as my dad things it is....

OP posts:
TheGoddessBlossom · 26/01/2009 09:40

oh and the dressing herself thing - she would wear the same things every day if my dad didn't remind her to change them, whether they were dirty or not. And she used to be so proud of her appearance, and now she deosn't bath enough, cut her toenails even! Dad has arranged for her to have her hair done once a week now, so at least she looks a bit like her old selve for a a few days....

OP posts:
Lemontart · 26/01/2009 10:24

depression was one of the side effects/exaggerators/part and parcel of what my gran is dealing with. Nobody is sure if it is as a result from the growing sense of confusion and isolation of her illness or whether her ongoing undiagnosed depression (since my granddad died about 3 decades ago in her fifties) triggered her withdrawal and hastened her decline. Whatever the situation, depression is a big part of her illness now. It has taken us about 3 years to get her on the correct balance of medication to treat it. This waspartly because she refused to take any pills (depression is an embarrassing topic for her, sadly) and took a long time to get her to be honest with her feelings - when she was able to even be honest with herself.

I understand totally about the reading part. My gran used to read and read for hours. Can hardly concentrate or follow a paragraph now - and nothing to do with eye sight. For Christmas I made her a scrapbook - got all her grandchildren and great grandchildren to write a poem, short story, little letter, drew a picture or hand print of the tiny ones, photo of each etc - and did the scrapbook with each page per child with their name and age clearly at the top, with "xx and yy?s daughter/son" next to it. Then on other pages I did family group photos and a photo of our houses - again with big titles spelling out exactly who is who, what the photo is of etc - not lots of writing, just simple enough for her to have her memory jogged. This year we had a few large family events too - a wedding, a golden wedding anniversary, milestone birthdays etc so did a few "events during 2008" pages too. Kept it simple, colourful, lots of things to look at with clear explanations.
According to my aunt (who lives near Gran?s care home) she looks at it each day and carefully follows and says the names out loud, willing herself to remember all over again.

For me one of the hardest things is knowing that my gran knows. She is not "bonkers" all the time (her word, not mine) and is very aware she is slipping. On a visit just before Christmas she looked at me dead in the eyes and said something on the lines of "I know I am losing my mind. All I have left are my memories and slowly these are being stolen from me. I can?t even remember if I put any knickers on this morning".. at which point she became distraught as she had to be carefully taken to the bathroom to check, bless her, as the thought of sitting with "company" and not have underwear on was too much for her. That brief intense look she gave me, willing me to understand and connect has me in tears now, remembering it. She and I are similar in many ways and I see so much of her in me. The mixed feelings of desperation and hopelessness was/is very hard to live with.

morningpaper · 26/01/2009 10:27

Gosh how young she is.

Can I recommend talking to your local branch of Mind - not so much for your mum, for your dad? They will be able to tell you what support is available for Carers in your area. He sounds very much like a full time carer now but there are organisations that can provide assistance and also, recognising that he is in that role might help him to seek some assistance.

I'm so sorry, it must be so frustrating and sad to watch your mum's decline in this way, and at such a terribly young age.

PenelopePitstops · 26/01/2009 10:49

Goodness you are so right about the dressing thing. My nan puts new clothes out for my grandad otherwise he would have no idea. Same with his hair, she practically marches him to the barbers!! Although he is pretty good with shaving which we all find rather odd.

My nan maintains my grandad can't rezad but whenever he comes in the car he can read road signs so he must be able to. He is very into gardening and spends hours outside tending the garden, nothing much grows but again he is happy in his own little world. My mum started giving him the gardening section of the paper and he 'reads' that. He does occasionally say things about the articles so he must have read some of it. My mum also brought him story tapes, but he can listen to the first chapter everyday and get no further so that didn't go well.

New places are also a struggle for grandad. Because of the drugs he is on hhe needs the toilet quite often, and as he cannot follow directions we have to walk him there and wait for him. Even in our house he has to be reminded everytime.

Lemontart i think the worst part is when they know what is happening. My grandad will sit there and say he feels like his mind is draining away and we know there is nothing we can do about it. We are lucky in that at the moment he still has memories from his childhood and his childrens generation. Though he often gets confused between generations and thinks jhis grandchildren are his children and vice versa.

TheGoddessBlossom · 26/01/2009 12:17

All, thankyou so much, this is really helping me. (cos it's all about me after all! )

Lemontart - your post made me cry. I think the scrapbook idea is just lovely. I asked mum what she wanted for Christmas, and she said "I want to be how I used to be". She is very aware of how she is behaving, and gets very upset by it - frequently apologising when we are all helping her look for her keys for the 4th time. As previous posters have described, she does have better days than others - can almost appear back to normal some days, and others looks completely off on some other planet and crying frequently.

Mum wants to cuddle alot, and hold hands, as if the physical connection is something she can still have without having to be back to "normal" to get it IYSWIM....

OP posts:
BlaDeBla · 26/01/2009 18:26

My mum is going through similar. Do you have regualar contact?

My dad has all but taken over my mum's life and it's hard to distinguish what is disease and what is her trying to make life with him easier for her. My mum is the same sort of age as yours.

TheGoddessBlossom · 26/01/2009 20:43

yes I live 2 mins from them, but work 4 days a week so usually see her once a week or so.

Yes my dad is completely in control, but then he always has been to a greater or lesser extent - very much the more dominant partner, but Mum used to hold her own when we were kids - she just doesn't any more.

OP posts:
TheGoddessBlossom · 26/01/2009 20:43

yes I live 2 mins from them, but work 4 days a week so usually see her once a week or so.

Yes my dad is completely in control, but then he always has been to a greater or lesser extent - very much the more dominant partner, but Mum used to hold her own when we were kids - she just doesn't any more.

OP posts:
basementbear · 26/01/2009 20:53

Sorry to hear you are going through this, and I know you say the doctors have ruled out Alzheimers, but the symptoms you describe sound exactly like those my Mum showed when she developed early-onset Alzheimers - she was in her late 50s when it first started. It started with the memory loss, not being able to tell the time anymore, then not being able to write etc - for a long time my Dad covered it all up and I think she was in denial too because she was so young. She had a history of high blood pressure, which is often the case in Vascular Dementia and the doctors now believe she has Vascula Dementia and Alzheimers (it's possible to develop more than one type of Dementia). Dementia is very difficult to diagnose in younger people because the symptoms can be mistaken for depression, menopause etc. I would recommend speaking to the Alzheimers Society or getting some of their fact sheets, I found them really helpful.

cmotdibbler · 26/01/2009 20:53

My mum is 67, and is in the slightly earlier stages of what I presume to be vascular dementia.

The Alzheimers society are really helpful and great to speak to.

Mum has enormous difficulty remembering the words for things/places/people, tells you the same story over and over, and forgets that she's done things. My poor Dad gets it in the neck for things that he hasn't done.

The not thinking to help thing really rang a bell - at Christmas mum just sat whilst we were cooking/looking after ds/ cleaning up/getting drinks which was so unlike her. She is also uncharacteristically agressive - which is heartbreaking

TheGoddessBlossom · 26/01/2009 21:13

I wish my mum would tell me a story - I miss hearing her voice!

Interesteing that you think it's similar to Alzheimers Basement Bear....and Vascular Dementia is cropping up again and again....

OP posts:
ACL · 27/01/2009 17:22

My father had vascular dementia and my mother is looking as if she is developing this. I will try to think of things we found fun and helpful. You can feel like you are becoming a parent to your parent as well stil being the child.

I am trying to read Contented Dementia - interesting ideas so that the person keeps calm and feels reassured by having familiar things around them for example.

  • play videos/DVDs/music from years ago - for us, Dads Army, Fawlty Towers, Two Ronnies, Morecombe Wise - for us - what did your mother really enjoy? Find something the family will enjoy too so that your children can be part of this at times
  • boardgames for children - something easy for everyone so that it is fun; did she like crosswords so maybe easy word games and oh yes, would she help with some of the spelling homework if your children are doing this?
  • pick up the newspaper and show photos and discuss things from this, often referring to your past but also the present
  • find books from years ago on the shelf, and read bits out perhaps more relevant for poems - ones she loved to hear or read
  • what hobbies/interests did she have - could you help her do some flower arranging - children could help pick flowers - or bring in a plant (especially seasonal so this will help her know which time of the year it is) for her to water etc - the stronger smelling the better eg hyacinth, narcissi ... Did she like cooking - maybe if you had spare time, do some cooking together so she could help mix say the mixtures - again this helps talk about the past.
  • one friend once said, "my news is everyone else's news" ie things do not happen so much when you are elderly so you find out more about others daily life, so a chat over a cup of tea and cake/biscuit helps, and sometimes just finding a different biscuit helps eg think back to what she liked or was fashionable in your childhood - taste this way can help prompt memories eg "squashed flies" ie Garibaldi!
  • show any photos from before, videos/cine - I must do some scrapbooking so I can put the mass of photos together - so far we are just going over the mass, so many untitled. Maybe make a family tree if she would enjoy this?
  • can you pop in after school if yours go to school - so you can have a sort of afternoon tea - talk about the day etc
  • early evening/late afternoon is often though not a good time for memory and yes each day varies - I used to be upset when visiting and my father was not at his best after say a day when he had been nearly back to his normal self - it is quite an emotional rollercoaster for everyone
  • by the way, we find M&S fab for buying clothes - the personal shopper does all the choosing and we stay in the cubicle. You may find tho she is reluctant to get rid of her old clothes as they are so familiar.
  • yes, regular hairdresser, and chiropodist, and someone to do nails - prompts to change clothes etc but tactifully altho at times it is easy to sound a bit too bossy - think before you talk (I try to remember this but tricky when you are tired and running after children too)
  • check she is drinking enough and eating fibre etc; keep in mind, wee infections which can make people more confused or not drinking enough (I think not drinking enough can prompt wee infections), and also being constipated (would she like snacks of ready to eat prunes or ?)
  • are there any friends who would like to visit on a regular basis?

Yes great info at Age Concern and Alzheimers and good support over the phone.

Also do you have someone who you can talk to over a cup of coffee - this really helps me offload. Can you find some me time too - I find Tai Chi for one hour a week can be a great boost to keep me going.

Thinking of you

TheGoddessBlossom · 27/01/2009 17:54

ACL - I am touched and very much helped by your post, as well as all the others. Thankyou very much for all your suggestions I shall be discussing them with my sisters and certainly implementing lots of them!

OP posts:
BlaDeBla · 27/01/2009 18:09

There is an organisation which is there to help families who are coping with Early Onset dementia. I can't remember what they are called but I think they are based in Oxford.

My father has effectively cut me out of my relationship with my mother. He is also making getting help impossible. He has something very wrong with his brain and should be in a loony bin. My brothers think this too. Not much help with Alzeimer's.

TheGoddessBlossom · 27/01/2009 20:42

My mother has had an appt today with her original consultant who has diagnosed formally that she has had a small stroke. She has to have another MRI scan focusing on the frontal lobe, which is not till June, after which she will be prescribed memory enhancing drugs. Why my Dad is not going private to expedite things only he knows as money is not the issue.

It is helpful to have something physical to hang the symptoms on, and is also consistent with the fact that her symptoms do not come and go like those associated with Alzheimers.

Thanks to all that have contributed. It has been unbeleivably helpful to discuss the matter here, and I appreciate all and every response.

Thankyou.

Bloss

xx

OP posts: