What do I say to her?

[soozieann]

Hello,

I have just joined. My 92 year old mother seems to be suffering from dementia, the symptoms of which are exacerbated by almost continual UTI'S, despite a prophylactic anti-biotic.

My problem is, the psycho-geriatric hospital need to assess her. Her social worker and I are encouraging her to go to the day hospital twice a week, but she is being very difficult about attending. She has been three times out of five, once with me for her initial assessment. It is like having a child trying to get out of going to school. I reached breaking point last week, when I told her that if she didn't go, and if she needed help further down the line, she may not get it as she hasn't been assessed. Up until that point I had tried to cushion her from her condition, I still can't come out and say 'you probably have dementia'. I did however say that she is very confused, forgetful and has started seeing people at home again- all of which may be able to be helped by taking medication, but she needs to be assessed first. She was still being very resistant, so I told her that if she gets worse I can't do anything about it, as I am at the end of my tether and she will be in her home sad, depressed and scared. I felt awful after I'd said it, but I was trying to shock her into understanding something of her situation. She did go to the hospital once after I'd said that, but didn't go yesterday as she said she had vomited and was unwell. As I was the only one she'd said this to, I think it may well have been an excuse.

This morning I received a phone call from her main carer to say Mum was trying to get out of the house to go to a Christmas party [organised by Age Link]. I immediately phoned her and she was very confused, saying she had to find a way of getting out to get to the party. I tried to explain that it was only 8.30am and a car was coming for her at 11am. This took some understanding as she was ready to go and had forgotten about the car coming. She seemed to be concerned about getting the front door open. Once she understood, she then asked crossly what she was to do in the time she had to wait. I suggested with exasperation in my voice, that she could read a book or read her paper, or start writing her memories down which we had spoken about. I also reminded her to wear a pad, as she has become doubly incontinent. She was obviously upset and cross with me so said she was ringing off. I was left feeling cross, frustrated and feeling I could have handled it better.

So sorry to have gone on like this, but I'd really appreciate some advice on what to say to her regarding the dementia. Should I be honest? How can I stop myself becoming exasperated when talking to her? We had a lovely day together on Thursday, but when she is on her own, she gets into a state and is hard to calm down over the phone. She positively refuses to consider residential care, even respite care, although when I spoke to her a month or so ago, she was accepting of respite at least. She then had to be hospitalised for two weeks due to extreme disorientation and distress due to a massive UTI. She has now been out of hospital 3 weeks and is suffering from another UTI. She has three carers a day and Meals on Wheels.

Looking forward to hearing some words of advice, I really feel as if I can't cope much longer and dread the phone ringing. My relationship with my husband and 14 year old son is suffering also.

 

[Sheila]

Hi Soozieann, welcome to TP. Sorry to hear of the problems you are facing with your Mum. What you say will be familiar to most of us here, so I am sure you will get plenty of support. The confusion, UTI's and denial are all par for the course sadly. I can understand your exasperation, but you hit the nail on the head when you said it was like dealing with a small child. It is very much like that, but with one who also has a memory problem too. I found with my Mum, rather than come right out and say it, I told her she needed to see people at this special unit to help her cope with her memory problems. I likened it to going to school and most of the time she accepted that it was indeed to help her. Sometimes she had tantrums and it was hard going, but if you stick to your guns, again like sending a child to school, your Mum will come to accept it. This illness is hard on the carers and their families, if you need to have a rant, you can always come on here rather than blow your top, I know its been a great help to me. Please keep posting, love She. XX

 

[soozieann]

Thanks so much Sheila. It was very reassuring to read your words. I shall tackle it in the way you have suggested, I think it needs to be the broken record routine.

Best wishes
Soozieann

 

[Finnian]

Sorry I haven't got any bright ideas to add; but a warm welcome to TP. Hope the support here will help you through all this.

Regards Finnian

 

[soozieann]

Thanks and apologies

Hello Finnian,

So sorry not to have replied before. Thanks for your welcome and support.

Mum went into to hospital yesterday. She had been feeling unwell all week, with swelling feet and legs which were weeping also an itchy rash on her upper body. She was crying down the phone to me yesterday morning, saying she was so fed-up, she couldn't go into her front room because 'they' were there staring at her and she had to ask her carer where she was. I went over to see her although I had said I wasn't going that day as I was trying to organise my home for Christmas.

She was a little calmer when I arrived but very unsteady on her feet and hadn' t eaten her breakfast. She managed to eat a yoghurt when I arrived, she's diabetic so it's important for her to eat regularly.

The CPN came and we finally got her to agree reluctantly to respite after Christmas. The distict nurse dressed her legs and gave her an anti-histamine, the GP was blaming the prophylactic anti-biotic that she'd been taking for five weeks.

When everyone had gone, she said she'd like her lunch, so I dished it up. After two mouthfulls she then needed the loo. I had to virtually lift her out of the chair as her legs had no strength. I went ahead to get a pad ready, but she fell and couldn't get up and I couldn't lift her. I called for an ambulance and she was admitted from A&E to the CDU last night.

I couldn't get to see her today but understand she is very confused. She fell again this morning as she was trying to get her trousers on without calling for a nurse. She will be moved to the geriatric ward as soon as a bed is available.

So, Mum will be in hospital over the holidays. I know this might sound mean, but I can't tell you what a weight off my mind it is knowing she will have 24/7 care and I won't have to worry about her climbing my stairs [she was due to stay with me over the holidays] or my husband or son coming across an accident in the bathroom.

The geriatric co-ordinator said to me today, it was highly unlikely that Mum would be able to return home as both physically and mentally she needed a residential home- this was music to my ears. We seem to have been given a short cut to this without finishing the assessment at the day hospital.

I just pray that Mum accepts this turn of events, that the right home is found for her quickly and that she gets enjoyment out of her life again.

Sorry for the long message. I wish you all the happiest Christmas and hope and health for the new year.

Very best wishes,

Soozieann
XXXX

PS. It's so good to be able to rant on here if I need to, as I'm sure my family are sick of me going on and on!

 

[Sheila]

Dear Soozieanne, sorry to hear your Mum has had some falls. But, as you say, clouds can have silver linings. If she is given the help she so obviously now needs because the falls have kickstarted the process, then in the end, your Mum is the winner as she will be safer now. Do hope things all work out soon, love She. XX

 

[boomer]

hi soozieane

have just read your posts and please believe me when i say i know exactly how you feel and know all about how unsettling a move is for your mum. my dad has just had 2 weeks in respite care ,and suffered a number of falls ,the worst of which led to broken ribs and fliud on lungs.Mum is main carer for dad ,but has her own problems and will not admit to them ......care in the home setting has now been agreed and is in place but i feel it is far from ideal and that he would be better in care....emotions run high-along with massive amounts of guilt in "letting" a loved one down. dad is stubborn,but,it takes time to "get used to something new" and even more time when the person has memory problems.....

it is the norm for anyone to resist change and going into a home,but it does get better and routines start to become familliar..hopefully .......

i hope your mum gets the care she needs ,and please enjoy christmas with your husband and son...the "pressure" has been lifted for a while for you .....take this time to share the festivities you deserve with them..........

god bless anne x

 

[Lynne]

So, Mum will be in hospital over the holidays. I know this might sound mean, but I can't tell you what a weight off my mind it is knowing she will have 24/7 care and I won't have to worry about her climbing my stairs [she was due to stay with me over the holidays] or my husband or son coming across an accident in the bathroom.
Soozieann
XXXX

PS. It's so good to be able to rant on here if I need to, as I'm sure my family are sick of me going on and on!

It might 'sound mean' to anyone who had no 1st-hand experience of caring for a fragile person, but you're perfactly safe to express that opinion here, as it will be understood in context.
What a relief it must be to know she will be safe & cared for, and to give you just a little more time for other family members to get a look in! I'm sure your family AREN'T 'sick of' hearing you go on & on, but - like my friends & partner - they can only stand by & watch, by & large. It's the feeling of helplessness which is frustrating for them, and seeing YOU hurting & stressed out, which they can do nothing about.

Best wishes

 

[soozieann]

Thanks so much to you all, I am so glad I discovered this site, your support is so important to me right now.

Mum is still in hospital, and needs a 24 hour ECG and also her legs and feet are still swollen. I am pleased this is the case, as she asked my sister yesterday when she was coming home, this is the first time she has mentioned it. She is also seeing her dead cousins and sisters, and seems to think she's out partying every night [not a bad delusion to have!]. She, of course cannot come home, and I've started the ball rolling by phoning the landlord of her flat and getting phone numbers of house clearance companies. I do feel awkward doing this though, as on the one hand I know she can't come home, but it's so final and what happens if a home isn't found? It's a very unpleasant feeling, like burning all your bridges.

She also said to my sister that she thought I was being paid to keep her in hospital, now that may sound funny, but last night when I heard this I felt very depressed. I had been out with a friend,her daughter and my son and some of his friends and had a lovely day, then to be hit with this and the knowledge that she'd moved wards again and so was going to be very unsettled today, was all too much. I have been kept so strong by my faith in Buddhism, but last night I must admit while I was chanting I just sat and bawled my eyes out. I had left her confused but happy on Wednesday and now here we were again with her being angry and confused. I felt as if I'd climbed one mountain only to discover there was another one facing me.

Today I feel better, and will see her later, so will have to string her along if she asks me about home. The referalls have been made for residential care, and there will be a meeting with everyone to this end. At least then there will be a united front and I won't be the only one cast as the big blue meany!


Wishing you all the best for 2006.

Soozieann

 

[inmyname]

Sounds very much like the last 48 hours with my Mother age 89

She has had entrenched views and a limited outlook on life for quite a few years
We are sure she has suffered many TIAs as theres been several accidents and incidents yet no hospital has ever found anything

She has severe Osteoporosis , uncontrollable High BP and rhuematoid arthritis is on so many pills i think they are all fighting each other plus she insists on cooking everything in Aluminium along with shes only moving out of her house in a box !!

The last year she has been increasingly difficult , moody, nothings right and you cant do right for doing wrong and neighbours say the curtains have been drawn all day or shes sent them off with a flea in their ear

Mother refuses point blank to go to the doctors , always claims to be throwing everything over her shoulder ( must be a huge mountain of symptoms behind her )

She often will not answer the phone or the door yet this is interspresed with periods of "normality " which must have convinced her doctor to sign her forms to renew her driving licence in Oct ............the thought of her driving scares hell out of us

My Sister and I shared Xmas each having her for 2 days
She was vague at times , strange conversations ,and had to be led to meals like a child yet was up and dressed at 8.30 every morning and packed all ready to go home ,yet she claimed a newspaper was far to heavy to hold in her hands to read , in fact everything is too heavy ,

On the journeys to and from she would constantly ask either my husband or my sister if we were on the right road , did we know the way etc etc

My sister took her home ,made sure the house was warm and there was food in the fridge and was told to go home
Yet 2 hours later Mother phones her saying that she expected her back , she had been dumped in a strange house and she was angry .....nothing my sister said would calm mother down

Yesterday my Mother phones my sister in a terrible rage everythings wrong she does not know where she is claims no ones come in to give her her meal at 7.30pm !!!!!!!!
she went on and on to a point my sister was in tears

Turns out My Mother had gone across to the neighbour earlier with a huge bunch of keys in her hand totally out of it and claiming she had been locked out etc etc
The neighbours eventually got her back into the house and its been quiet since

What beats me is how my Mother can go downhill so fast or do you think she actually has Vascular Dementia and maybe things will escalate to a major stroke

Needless to say its holiday time and weekend and doctors arent available
not that we know her doctors number ........she is so secretive and determined to be independant to the last

I can only hope that between now and when we can involve doctors and social services etc she simply does not wake up from sleep because to me its quality of life over quantity and for someone who always had to be doing things to one reduced to a vegetable sitting in a chair that is not life in my book

 

[Brucie]

What beats me is how my Mother can go downhill so fast

that is the difference with vascular, compared to Alzheimer's. TIA's or mini-strokes happen, and can happen in series, and they can be minor, or quite major things.

Coupled with changes of surroundings [though loss of recognition of own home is normal at any stage], this will lead to a person with dementia appearing to go downhill faster than we would expect. Also, seeing more people more frequently than normally happens can cause additional confusion.

Sometimes this can be addressed with medication, sometimes recovery happens - to a degree - over time, until the next TIA.

TIAs are rarely fatal and don't necessarily lead to more major stokes.

The dilemma of quality of life is a subjective one. For me, and talking about myself, I agree totally with you. But I don't feel I can speak for my wife, so end up hoping something will take her painlessly, sooner, rather than later. One of the reasons I may be the only one not to fear a bird flu pandemic! [only half in jest, this].

 

[inmyname]

My Mother has always said she did not want to be Ga Ga in a home

So I can but hope that she simply does not wake up or like you say bird flu strikes

Cant help but chuckle over my Mother on 30th Oct saying that

The next day she had to go and have a test for flies !!!!!!!!

and that she had left the car outside because it was too difficult to put it away in the back bedroom

Turned out she meant she had to go for flu shot the next day !!!

 

[oonaghw]

Hi inmyname

your mum sounds just like mine was - episoides for years and a query AD which a cat scan revealed was vascular dementia. As Bruce says TIA's rarely lead to a big blow and so all that happens (based on my own experience) is that the faulty wiring becomes more faulty. The rate of acceleration does appear to spead up after a point, but that probably depends on which connections have been affected.

Enjoy your mum while you have her, always remember (however hard and stressful that can be) that her wiring is faulty. Make sure shes safe and has the support she needs and most importantly make sure you have the same.

My mum went from being a vascular dementia patient, with some strong and weird ideas (Iam sure she suffered hallusinations), she was mobile, continent and recognised her family in September 05 through a series of shut downs which eventually lead to her death in December. Along the few months she suffered many UTI's and was nearly permanently on an antibiotic, she would not eat or drink, finally she could not open her eyes, the body stopped controlling temperature and she got pulmonery eodema and took her last breath peacefully. As a family we thought she would go on forever and here we are.

Have the best time you can with your mum, because you cant tell which wires go next.

In my thoughts and prayers

oonagh

 

[Lynne]

She also said to my sister that she thought I was being paid to keep her in hospital, now that may sound funny, but last night when I heard this I felt very depressed. I had been out with a friend,her daughter and my son and some of his friends and had a lovely day, then to be hit with this ... I'm the one cast as the big blue meany!

Now come on Sooz, "she thought I was being paid to keep her in hospital" is just as much a fantasy as chatting away to long-dead relatives and being out dancing & partying every night!! She doesn't really think that at all, and no-one to whom she might have said it thinks it either! It's just the bloody disease talking, not really your Mum.

As Bruce & Oonagh have said, it's the faulty connections which lead her to say such things. Inside her head, she's probably trying to add apples to oranges and getting grapefruit, pips & all. Her brain is mis-managing the information, so what comes out is rubbish. If she's partying all night, that's something you can laugh about, albeit tongue in cheek. Her remark about you keeping her in hospital is just as nonsensical, but you have taken it to heart. We can all understand why you are upset, when you're breaking your back to look after her the best you can, but I'm not going to sit here & let you take it seriously.

I don't have a problem with you having a good howl now & then, I think that's a healthy release valve. Now take a deep breath, and start climbing again. It sounds as though you nearly have the residential care thing cracked, and you may be surprised to find that she settles quite well - especially if the immediate comparison is with a general hospital ward!

Best wishes

 

[soozieann]

How things change

Hello Everyone,

Sorry I've not been in touch, but I was not notified like last time that there were replies.

Anyway HAPPY NEW YEAR TO YOU ALL- may it be filled with hope.

Thanks for all your replies, and Lynne I did smile at yours, I guess that was a particularly bad day when I had a howl.

I was quite hysterical the Friday before last, when the consultant said he wanted to discharge Mum back to her own home whilst waiting for a care home to be found. He made that decision without her social worker. Well, letters were written to him and the psycho-geriatrician. So cut a long story short, after a home assessment with OT and social worker, it was decided it was unsafe for her to go to her own home. I know hospital is not the right place for her and I know there is a bed crisis, but my mother is safe.

What I'd like to say to Inmyname is that Mum was a bit like that earlier on, but now generally is happy, so hang on in there. My Mum is now seeing soldiers in uniform marching outside the hospital, and sees trains with lots of people, but she believes they're real and enjoys watching them. The aggression and difficult behaviour seems to have passed.


Bye for now
Soozieann

 

[Amy]

Men in uniform - no wonder she's happy!

Amy

 

[soozieann]

Men in uniform

Absolutely Amy- just hope I have delusions like that if it ever happens to me. I told her to watch herself and she laughed!

All the best
Sue

 

[JohnOHanlon]

Message for Soozianne

Hi Suzianne,
Iv'e just been reading through the discussion and first and foremost I have to say that every decision you have made so far has been commendable. You have done your best and if your mum was 'well' she would be saddened to see how sad you feel right now. At this moment in time, however your mum's illness is making her say or do things which just don't make sense-and if she were well she just wouldn't say/do those things. The problem we have is that as we come home we dwell on what has been said/done and try to make sense of it all which inevitably leads to feelings of inadequacy or even guilt. All I can say to you is don't even go there. You are caring in the best way you know possible at this moment in time.

Incidentally, one of the posts mention that your mum has deteriorated rapidly recently which is a cause for concern-as much as the huge increase in Altzheimer's/Denmentia we are seeing these days. I have done quite a bit of research into EMF's (electro magnetic field's) recently and the facts remain that we are subject to 1000's of times more EMF's than our grandparents. The worst offenders are Digital cordless telephones (DECT phones) mobile phones/masts and electric substations/pylons. Some believe that the strong frequencies from these items interfere with our body's own electrical fields and in the case of the very young and the elderly have detromental effects. These things take years to surface, however, but I was wondering if your mum had had a phone mast installed near her home or had been using a cordless phone in the past 2 years. The government have a website specifically to state where the mast's are and it is www.sitefinder.radio.gov.uk and apparantly if you live within 100 metres of a mast and it is sending it's signal in your direction there could be a problem. I would be interested in anyone who is concerned about illnesses near a phone mast. Feel free to email me on []
Kind Regards,
John O'Hanlon

John i've taken out your email address from the post because TP prefers people not to post private email addresses. There's a private messaging facility on the forum where people can contact you if they wish