Advise Please

[Kerry]

First of all, I am a new member to this forum, but I am finding the information here invaluable, thank you.

My 62 year old mother is currently going through the long (and seemingly never ending) process of diagnosis and medication. We are undergoing hit and miss trials of anti-depressants and have a long awaited consultation for a prescription of Aricept next week - keep your fingers crossed. However, we are relatively new to all this and her condition seems to have crept up on us over the last year or so. Whilst she seems quite happy to do things for herself most of the time, although she gets easily confused by getting dressed, bringing in 3 and a half pairs of shoes when she only wanted one pair, putting teabag and coffee in the same mug, there is no way she can be left alone so my father, sister and I are doing our best to support her. My father retired this year and has been devasted by the realisation of my mother's deterioration (which i think had been hidden from him slightly whilst he was at work and my sister and I were doing much of the everyday things with her - we don't live with them but our jobs allow us time to get over during the day and evenings). One of the more concerning problems we seem to come across is this. There seems to be a time when my mum's mind just switches off. She can help us cook dinner, happily putting all knives (no forks) out on the table, eat her dinner quite happily chatting away - we are learning to translate her conversation now - when a little thing spilt dinner on her jumper will cause her to burst into tears and start making up stories about the council evicting her from her home, my father beating her up (he wouldn't dream of touching her) or something else like that.

But a further, much more scarey thing, that is happening is that she has started walking out of the house when our backs are turned and "visiting the neighbours" as they are only ones she can talk to! This has meant combing the local area for her (I live 3 miles away), having a neighbour come round and say she has arrived on their front door claiming she is being beaten up by my father or just not making sense when she does speak to them. However, when we bring her back and question her about why she walked out - she will deny she has gone, claim all sort of outslandish reasons as to why she went, cry hysterically and then if we manage to divert her attention, all is right with the world again. The next day she will deny that any of this has happened of course.

I am trying to get my dad to complete a diary of her day to day activities as I think I am starting to see a pattern emerging in her behaviour - this malfunction seems to happen at about the same time of night. But he is in denial and this is all too much for him to cope with.

I am worried that perhaps she is getting bored. It is often too late to go for a walk, the weather is too bad, she finds it hard to concentrate on the tv or a book (she can read, but cannot explain what she is reading). I think she is like a pressure valve that needs a release.

Has anyone got any ideas of something I can give to someone with her condition that does not require any great concentration?

 

[Brucie]

Hi Kerry
the walking out sounds to me pretty much like 'sundowning'. In our case Jan would start at around the same time daily. I would plan for it and hope to slip her some medication before it would take hold; that was not always possible.

I don't think it is anything to do with inactivity because I would try to keep her active when I knew it was due and she would get to a point then say, in effect "sorry to have to leave you but I have to go home now". Later, also, I locked and chained the doors.

I would dread the time of day [3pm onwards], but I never really found a satisfactory remedy.

My best wishes, Bruce

 

[Linda L]

Kerry, First of all welcome to the site, I hope you get as much out of it as I have. Firstly the bad news, things will get a lot worse. There will be people reading this who will be saying "you shouldn't tell her that", well I'm sorry but it's true. I may not be the best person to advise you as your father is still alive, my Dad died just after my mum started with Alzheimers but we didn't realise what the problem was to start with and then we had 18 months of hell. Calls in the middle of the night asking when we were picking her up, stealing from shops, an obsession with the lottery (she spent about £100 a week on it we eventually found out) pleading poverty to relatives and neighbours, visiting neighbours, some she hardly new and just plonking herself down in their sitting rooms! We also caught her eating raw chicken which she thought she'd cooked, but had forgotten to put in the oven!! She also sent £5,500 in 18 months to these idiots who write and tell you you've won a fortune if you send us some money to cover expenses.
She wouldn't go to the Doctors as "there's nothing wrong with me" eventually we got her to a Dr and he agreed to refer her to a consultant. Unfortunately, the first one we saw was not the top man, he was an Indian gentleman who basically told us that we she move her into our house and look after her. Sounds simple and apparently in India that's what they do, but fortunately we had joined a carers group and they had already told us that there was no way we should do that as it would make her worse and destroy our lives too. We complained and eventually got to see the top man. He diagnosed Alzheimers, the test was good, she thought Sooty was prime minister - oh if only but I digress.
To cut a very long story short, my mum is now in a home having been sectioned under the MHA, she is currently on what is called S.117, but they are trying to get her off that so that she has to pay herself!! She is now doubly incontinent, hasn't spoken for 18 months and hasn't recognised me for about 2 years. I go in to see her about 5 times a week because I love her even though it isn't really 'my mum'. And if you want the real truth, yes she would be better off with my Dad.

So what advice can I give you,
1 Try and get your Dad to identify the problem
2 Get as much help as you can
3 Don't feel guilty if you mum has to go into a home
4 If you are going round to see your mum, give her a time, don't just say 'I'll see you later'
5 Retain a sense of humour - this is most important and don't be afraid to laugh with your mum at some of the ridiculous things she will do, you'll spend more time crying than laughing, so the laughter will help enormously.
6 If she is still able to understand, get her to sign an Enduring Power of Attorney, it will be one of the best things you ever did, believe me.

With Mum now in a home, at least I know she is safe and whilst no home will look after my Mum like I would want to look after her, I now know that it is the best place for her. I have the utmost respect for those who care for their partners and loved ones at home and if anyone wants to call me selfish then so be it, but caring for someone is a 24/7 job and I know my limitations and I and my husband are not capable of that, we wish we were.

Good luck and I hope someone else responds with something more positive than I am able to offer.

Linda xx

 

[Brucie]

I agree entirely with Linda!

Everyone's experience is different in detail and some of the effects, but the broad [downward] path is there and it does no good to ignore it - nor to ignore the help that knowing there are others in the same position can give.

 

[kareng]

Hi Kerry,

Your story is very familiar. My dad covered up for my mum for a long time and then was adamant that things weren't as bad as they were. She went through a period when she claimed he was mistreating her. Once she hurt herself badly trying to 'get away from him' - she fell down a steep-sided river bank, cut her head wide open on the rocks and appeared muddy, wet and bleeding at the neighbours' door. This was in the early stages and was a real wake-up call.

The good news is that Aricept did the trick for quite a while - calming her and getting rid of most of the delusions. (We later found it was giving her Parkinsonian side-effects, but that's another story). That improvement didn't happen overnight, and in fact she went into a local dementia unit for a few weeks before she first started it so that they could monitor her symptoms. This gave the medical professionals a chance to really examine her (they thought there might be a thyroid imbalance, so they checked for that and gave her all the relevant brain scans as well). And it gave my dad a rest and forced him to come to terms a little with what was happening.

I can second all the advice about getting help, residential care, humour and EPAs.

One thing I would like to add to what others have said is to look out for your dad as well. It sounds like you're doing all you can to help both of them, which is great. Possibly your dad is younger than mine, who was in his 80s at the time but physically very fit, but they may be having the same kind of reactions. He a) hated the very idea of dementia and preferred to not think about it, b) was new to dealing with mental illness of any kind. It was very difficult for him, emotionally and physically tiring, but he hid it well (his philosophy was that you didn't complain and you didn't talk about your problems). He got very depressed and, with my concentration on my mum, it took me far too long to understand that he needed caring for just as much as her.

And look after yourself too.

Karen

 

[susan]

Dear Kerry
First of all welcome to a site that will support and give you shouting space.
My dad was sectioned 4 years ago July - yes he is still with us - spent a year in hospital, but now in a nursing home as it was either my mum or my dad - she just couldn't cope with his activities anymore, ranging from aggressive behaviour to the most obscure - pooing in the house where ever he felt comfortable!
I have spent many an hour feeling guilty about putting him away - it wrecked my life for 2 years - i'll never forget the day he went in.
There is no easy answer to this disease - we have to go with gut feelings and suffer the consequences.
I have now come to terms with his illness, but it still hurts to see him like he is.
Do what you feel is right - we are all different in how we handle this debilatating disease - you can read all the advice going- but please don't neglect your own life - i did and it's taken me a long time to pick myself up again.
Love my mum and dad dearly, but i also love my husband and kids!! Take care Susan

 

[Linda L]

Well Kerry, I hope you have found the thoughts of fellow members a help, some important pointers from Karen and Susan.
Your Dad will be going through a lot of different emotions, Anger and Guilt to name but two. Having just retired he would no doubt have had many plans in his mind and now those probably all appear to have gone out of the window. He may be in denial at the moment, but hopefully he can soon accept the situation and there will be some very difficult decisions to make in the coming weeks, months and years.

Susan made a very valid point in refering to the fact that you must not neglect your own life. We had 18 months of sheer hell and it took our relationship to the brink and made my sons life extremely difficult just as he was in important exam years. It is an unforgiving illness, but don't let it take your life away as well, it is easy to let it happen.

Oh and if I didn't say before, you'll probably have to make a lot of noise to get the proper help, that didn't come naturally to us, but it's often the only way to get action!!

Good Luck
Linda

 

[Sheila]

Kerry, yes my mum does it too

Hi Kerry, Brucie hit the nail on the head, it's sundowning, something to do with seratonin or the likes, causes them to play up more at that time of day, - sundown! Not that it makes it any easier to cope with, but at least now you know your not alone with it. We have various strategies, the first being distract don't react, the second is a walk to wherever she thinks shes off to but really just round the block or something. The third is her risperdal tablets (antipsychotics) after that, we just go into "lock down", all doors locked and keys removed and we just weather the storm till she is ready to go to bed. It's hard, it's hurtful, and it's darn unfair but there it is. So far, we have staved off the going into a home, but it gets pretty tempting some days. Only you and the rest of the family will be able to decide when/if the time is right to do this. Best wishes to you all,
She XXX

 

[Brucie]

oh where was this forum when I needed it 3-4 years ago!

I thought at the time I was the only one to have to deal with the situation of sundowning.

That's the power of the forum, we can at least know we are part of a not-so-merry band, even if it does not directly help with the problem!

 

[Geraldine]

Hi everyone

I'm with Linda all the way - Mum lived with us for 5 years and the last year when the Dementia kicked in was exhausting. For about 9 months I was getting up several times a night, in the end a Home was the only option and I felt immense relief certainly no feelings of selfishness I had given all I had and a lot more. Now I have time for my husband and son and Mum is getting better care than I was giving her. It is a very difficult journey, I used sitting services, a little day care, some overnight sleepovers, many many heart to hearts with friends who said I really needed to look at Nursing Home care, I resisted until I was at screaming pitch. This forum is brilliant a non judgemental listening ear.As Brucie says I wish I had found it this time last year when my Mum's sundowning was at its worst, I can smile about it now, Mum must have had the most active life possible for an 80 year old with limited mobility and memory, yet we could get in after being out all day and seeing maybe a couple of friends and after 30 mins she would get that look on her face and say she never went anywhere saw anyone no-one loved her and she was moving back to Tamworth....... believe me her suitcase was nearly packed on many an occasion....... One last thing that Linda mentioned, please do not let the authorites belive you are coping they will just leave you alone, those who shpout loudest get most help, upsetting but true

best wishes

Geraldine

 

[Scary Mary]

It’s nice and at the same time not nice to read all the same things that are happening to us.

My mother in law has just been diagnosed with early stages (what ever that means!) Alzheimer’s. We only realised there was a problem after my father in law died about 6 months ago who we now believed covered the problem up.

At first we really thought we were over reacting and that we were reading more in to what was happening then we should. For a time we thought we were going daft. However when we realised there was a serious problem we were relieved. How terrible is that!

She has just been given Aricept and has been on anti depressants since her husband died. But she is not taking them (we found than left in draws and on the floor).

We are also getting a lot of white lies as she tries to cover up mistakes because she has forgotten something. I think she really does not understand that anything is wrong. She now lives on her own about 30 minutes away. There are two sons my husband and another who leaves in another country. We have both offered to have her live with us but she refuses and says she can mange OK

We worry something will happen and there is nothing we can do. We feel we must do something and it can not go on like this. A lot of the advice available both on this website and elsewhere generally assumes that the person is either living with the carer or in a home and so is not as helpful

M

 

[Kerry-Jane]

Thanks everyone for your replies. It is nice to know that what we are experiencing is not that unusual. It just seems extremely scary to us at the moment. Through a lot of kicking and screaming we managed to get Mum into extended psyciatric tests with specialists attached to the Atkinson Morley and into a stay at St George's for medical tests, so hopefully we can get things moving on the medical front.

Thanks for all your support, I intend to make this forum a regularly stopping point on my surfing.

Best wishes.

 

[janemary]

Sorry to add a pessimistic note to all the others. Yes, it does get worse. I saw my mother deteriorate in the same way as all the other respondents and am now going through it again with my husband. My advice is to get help wherever you can - for your Dad. Use any carers you can to give him a break. My children have been wonderful, but I have felt an overwhelming need for reassurance from them and the need to know I was important to them. When one's partner is "lost" as your Mum will be to your Dad as she can no longer fulfil her old role, if your Dad is anything like me, he will need the reassurance that he is not being sidelined - that he still has a lot to offer to you and you still want his company. If you haven't already try to join the local Alz. Society. I found them an invaluable support. Especially as my husband, like your Mum is young. This leaves your Dad with so many regrets as to what he is missing out on in his retirement. My children also felt bereaved when their Dad no longer took an interest in them (because of the dementia) so you, too, if you have time might find the Alz. Society a help. One article I read to help with the "going out" was to leave the original door handles on the outside doors, but remove the fittings and fit door handles that actually work higher up on the door. Usually the person with the problem can't work out why they can't get out, but it saves having to be locked in. Of course, this may cause even more frustration. Another article said put a dark mat in front of the door as often people with dementia don't like to go over a dark space thinking it is unsafe. As for occupation to prevent boredom - I tried everything I could think of : colouring books (there are adult ones with simple pictures); jigsaws; dominoes etc. but all need someone to be there to play them as one of the first things my husband lost was the ability to initiate any activity. Then music, small table tennis game (sold as an executive toy); magnetic darts ; going for walks; etc. Also, say to your Dad and yourselves that you cannot keep up activities 24 hours. I still miss my Mum and regret that she couldn't enjoy her old age surrounded by her family (she died 6 years ago); miss the role she could have had in helping me with my husband. I miss my husband (he is now in a dementia ward). This sort of pain doesn't go away, but it would be so much worse without family support. Living with a person with dementia is heartbreaking, frustrating and frightening. Together, supporting each other is the only way through. Good luck. Try and laugh together about the awful situations your Mum will probably get into. Do the best for your Mum, but remember you all have lives to live too and you can't take the illness away however hard you try. Best Wishes.

 

[janemary]

PS Sorry Kerry - meant to say don't be afraid to use any Day Centres on offer. I resisted at first, both for Mum and my husband, but in the end I used them. Both Mum and Philip hated going, but they were a life-saver to me. If you have a local Age Concern I found they ran a good one - as well as one run by NHS. Has your Dad contacted the Community Psychiatric Nurse? She put me in touch with local services.

 

[Brucie]

Regarding testing

Just a small note - because I had private medical care with my job that also covered my wife, our GP arranged almost all diagnostic tests and consultancy to go via private consultants, for reasons of speed.

I was not greatly impressed by the mass of private consultants we saw. Anyway, as soon as diagnosis was eventually made, the private insurance withdrew all cover.

Just one set of key cardiac tests went through NHS, and that was at St George's. That really impressed by the thoroughness and the fact that it, alone, was able to say 100% that it could rule something OUT. NHS was by far the best!

When faced initially by bewildering symptoms [and the last thing you think of when the person is 50 is dementia] it is helpful to be given definite decisions on tests. I found the private tests required far more visits than did the NHS ones, though I am sure that the fact that sizeable fees were associated with each visit would not have caused that. ;-)

 

[Linda L]

I have just read the post from Scary Mary and I have to say that it choked me up. Why? Because her circumstances virtually mirror what I went through when my mother was first diagnosed with A. My Mum was living on her own and she too refused to identify that she had a problem or perhaps she couldn't understand that she had one! I worried my self silly that she would come to some harm or would harm someone else, not that she was in any way violent, but she would leave the gas on or would cross a road without looking which could have had serious consequences for others never mind herself.
We initially wanted her to come and live with us, but all the advice we were given by professionals (apart from a junior psyciatric consultant who was Indian and was quite indignant that she wasn't living with us) and others in a similar situation was that it would be the worst possible step both for her and for us!! I am now glad we took that advice.
However, it didn't stop me not sleeping through worry as to what might happen to her and I ended up on the happy tablets which I am still having to take 3 years down the road!
Mum was too far down the line to receive Aricept by the time the PC saw her, but if she has been prescribed them get her to take them, slip them into her food or drink, do whatever you can, they are not a cure, but if they do arrest the disease and you believe that that is for the best then do it.
Is it for the best? Well, who knows, I don't seek to offend anyone here, but this is such a wicked disease that I would have to question whether it would have benefitted my Mum had she been prescribed the drug, it wouldn't have made her any better and the liklihood is that it would just have prolonged my agony.
She's now in a home and I have the comfort of knowing that she is not wondering the streets at night or leaving the gas on or eating raw chicken, yes she used to do that because she thought she had cooked it but hadn't!!
Mary, get as much help as you can and bang the drum as loud as you can with Social Services and such likes, you are going to need an awful lot of support over the coming days, weeks, months, years - who knows.
A few useful tips, well they helped us, make sure the neighbours know the problem, and likewise any local shops she regularly uses, OK its not feasible for big stores, but I found my mum stopped going to the big stores for whatever reason anyway. At a later stage you may have to give them your number as we did, because Mum used to go in and forget she had to pay or would forget to take any money with her. The shops that we told were not a problem, those we didn't were, one even called the Police believing she was a shoplifter!!
Put her name and address and a contact number in as many bags and pockets as you possibly can, then if she goes off and forgets how to get home, the Police or whoever will know who she is.
And most importantly of all, don't neglect yourself and your family, you'll go to hell and back, but you have to have a life of your own, even whilst all this is going on.
Good Luck Mary, hang on in there and keep posting for support.