Newbie needing help!

[Swansea89]

Hi all, I’m new to the forum and could do with some advice!

My gran has vascular dementia diagnosed 3 years ago although would say she’s had dementia for at least 3 or 4 years before that.

Me and my mum moved my gran along with my grandad also ill with Parkinson’s disease dementia in to an annexe joined to our house. To cut a long story short he’s been in hospital for 7 weeks and we really have no idea if he will get to come home as he’s very ill with psychosis. My gran is dependent so we had to move her in to the house with us. Only after being with her 24/7 for 7 weeks have we realised just how little she can do... nothing what so ever, she won’t even be left in a room on her own for a minute so it’s been very tough. I honestly don’t know how my grandad managed, I guess he didn’t and that’s why he’s now so ill in hospital. We are managing to cope and were considering this to be a permanent thing if my grandad can’t come home but we have a major problem which is incontinence, bowel and urine! We can deal with the urine but the bowel incontinence is a whole bigger problem. She never ever asks to go to the toilet so we ask at numerous times during the day but she just says I don’t need to go. We get her to go in the bathroom before getting in to bed at 11pm but almost every morning by 6am / 7am I can only describe it as waking up to a murder scene but it’s not blood it’s poo, and it’s everywhere, all over her bedroom carpet, clothes, doors, walls, she must stand in it because then there’s footsteps all along the landing carpet then we go in the bathroom and she’s covered that in poo also. The hand prints will be along the walls where she’s touched with the poo on her hands. We can’t tell whether she’s having the accident in underwear, in just pyjamas, or just deciding to go on the floor or just having some kind of poo party. The smell is something else. The house just now constantly smells of poo and wee and even if we almost manage to not be able to smell it so badly she’ll do it again anyway. Is there any solution to this? Am I crazy to think she may pass this stage? We are trying to put it down to her husband being in hospital but it’s very difficult to live with and if by any luck he can come home there is no way he could deal with this in the annexe alone! She was having wee accidents in the annexe but I personally haven’t known of any poo accidents. My gran has and always is adamant there is nothing wrong with her and she will never go in a care home. This is our plan to keep them out of a care home but I’m not sure I can deal with this day in day out with out going stir crazy.

 

[try again]

Just wanted to say hello. I have no experience of this though many on here do. Have you had an assessment done, do you have any carers come in?

 

[Swansea89]

Thank you. We had an assessment done last year for my gran to have 14 hours a week of care. Social services struggled and finally admitted they couldn’t find anyone to do this, not helped by the fact my grandparents were adamant strangers would not be let in so I agreed to do be employed for these 14 hours. I’m in a position where I could do it as I do dog walking etc so I can work around it but since my gran has lived here I’m not able to work and I only have these 14 hours income to live off but I am 24 hour a day 7 days a week carer with no outside help. Finally managed to get one day a week at day care arranged recently so I have 10am - 3pm one day a week to myself but we have been told only one day a week is available for her.
My mum also lives here but works 5 days a week to pay the mortgage. I’m in my twenties and my mum is in her fourties so we are not in a position not to work as we have a mortgage, bills, cars, food etc so it is very difficult.

 

[karaokePete]

Hello @Swansea89, you are welcome here and I hope you find the forum to be a supportive place.

I think a call to the GP's may help as they may offer a continence service. Certainly it's time for specialist underwear by the sound of things.

A needs assessment may be in order as there does come a time when what the person wants is overtaken by what they need.

Here are links to some factsheets that will expand on this for you

https://www.alzheimers.org.uk/media/8261

https://www.alzheimers.org.uk/media/8211

 

[karaokePete]

duplicate - deleted.

 

[Baz22]

Hi all, I’m new to the forum and could do with some advice!

My gran has vascular dementia diagnosed 3 years ago although would say she’s had dementia for at least 3 or 4 years before that.

Me and my mum moved my gran along with my grandad also ill with Parkinson’s disease dementia in to an annexe joined to our house. To cut a long story short he’s been in hospital for 7 weeks and we really have no idea if he will get to come home as he’s very ill with psychosis. My gran is dependent so we had to move her in to the house with us. Only after being with her 24/7 for 7 weeks have we realised just how little she can do... nothing what so ever, she won’t even be left in a room on her own for a minute so it’s been very tough. I honestly don’t know how my grandad managed, I guess he didn’t and that’s why he’s now so ill in hospital. We are managing to cope and were considering this to be a permanent thing if my grandad can’t come home but we have a major problem which is incontinence, bowel and urine! We can deal with the urine but the bowel incontinence is a whole bigger problem. She never ever asks to go to the toilet so we ask at numerous times during the day but she just says I don’t need to go. We get her to go in the bathroom before getting in to bed at 11pm but almost every morning by 6am / 7am I can only describe it as waking up to a murder scene but it’s not blood it’s poo, and it’s everywhere, all over her bedroom carpet, clothes, doors, walls, she must stand in it because then there’s footsteps all along the landing carpet then we go in the bathroom and she’s covered that in poo also. The hand prints will be along the walls where she’s touched with the poo on her hands. We can’t tell whether she’s having the accident in underwear, in just pyjamas, or just deciding to go on the floor or just having some kind of poo party. The smell is something else. The house just now constantly smells of poo and wee and even if we almost manage to not be able to smell it so badly she’ll do it again anyway. Is there any solution to this? Am I crazy to think she may pass this stage? We are trying to put it down to her husband being in hospital but it’s very difficult to live with and if by any luck he can come home there is no way he could deal with this in the annexe alone! She was having wee accidents in the annexe but I personally haven’t known of any poo accidents. My gran has and always is adamant there is nothing wrong with her and she will never go in a care home. This is our plan to keep them out of a care home but I’m not sure I can deal with this day in day out with out going stir crazy.

You definitely need a continence assessment and a free supply of pads/pants. However, in spite of what might have been said in the past, you should seriously explore care homes as they can give 24/7 care and are well used to this scenario. My father was becoming very ill looking after mum and after a series of falls, paramedics etc we transferred from hospital to a care home. Yes, you feel very guilty but the health of those caring is also important. Mum's incontinence issues became a tipping point and was leading to serious skin problems. The care home workers are truly amazing with what they do and they monitor and make sure she is taken to the toilet several times each day. Good luck.

 

[Bunpoots]

Hello @Swansea89. I always thought I would be able to keep dad at home until he could no longer walk but after having to deal with several months of incontinence (urine only at the time, though I think he's probably both now) I recently came to the realisation that he would be better and safer in a Carehome.

Wih dad he went there straight from hospital but while in the home it became clear he needed 24/7 supervision to be safe. Dad had a couple of poo incidents and first time covered the bed and dad and the bedroom carpet, second time the bathroom, hall, kitchen and corridor to fridge...so I know how awful the clean-up is...and dad had no idea how it happened!!!

He has been in the home for a month now and has started to settle and make friends with the staff and one or two of the residents. It was decided he needed permanent full time care only 1 week ago.

I've tried to get his carpets clean with a carpet washer which normally does an excellent job but after about 20 attempts and several different shampoos the smell remained. I'm currently having all the flooring replaced so I think you need to get professional help for your gran asap. There is also the hygiene aspect to consider, not only for gran but for everyone else in the house too.

I think it's very unlikely that your gran's continence will improve but as her awareness declines she may just sit in a dirty nappy as a baby would and at least the mess will then stay contained - but this stage could be a long way off. Maybe you could get some respite to give you time to consider your options?

I'm sorry you're facing this awful problem, but sometimes dementia gets too much for one person, or family, to cope with by themselves.

 

[Duggies-girl]

My gran has and always is adamant there is nothing wrong with her and she will never go in a care home. This is our plan to keep them out of a care home but I’m not sure I can deal with this day in day out with out going stir crazy.[/QUOTE]

Your gran may be adamant but she is not the same gran that she used to be. I imagine that her former self would be horrified and probably very ashamed about the poo incident. She certainly would not have wanted her daughter and grandaughter coping with this and if your mum has to work then it will all fall on you..

To be blunt, you are far too young to be having this responsibility and your gran should be in a care home. You don't say how old she is but that she has had dementia for 3 or 4 years. She could go on for years yet.

If the plan to keep her out of a care home involves saving an inheritance then it is not worth it. Your peace of mind is worth far more.

 

[Swansea89]

I am starting to think a care home would be appropriate, some nights she just wanders all night and can be up and down so we find ourselves being sharp and angry with her when we are just lacking in sleep but obviously she’s unaware she keeps us awake some nights and then is unaware of all the accident she has.

We have an excellent carpet cleaner but not even that can clean up and destroy the smell and markings her accidents are leaving everywhere. I dread walking in the bathroom after her as I never know what I could find and we no longer keep anything in the bathroom as it’ll be poo covered!

Yes I definitely feel too young to take on such a huge responsibility, it worked ok when my grandad was home but that’s looking at it selfishly because he obviously wasn’t managing and is in ill health himself. My gran is 76 so she could have some years left in her yet as she’s as fit as a fiddle otherwise she walks up and down the stairs fine, but mentally completely gone.

Other members of family would like to wait it out and see if my grandad can recover enough to go home and be carer to his wife and are very much adamant neither of them ever go in to care but currently he’s in hospital thinking he’s at work and is very confused himself! They all think my gran behaves this way because my grandad is in hospital but I’m not so sure she’ll be any better once he’s home if he does ever come home.

To be honest there’s not particularly an inheritance as we sold the home they lived in years ago and used the cash for the annexe so we would naturally sell this house and they’d have the money back to use towards care homes.

I guess I was hoping there was some way to control the accidents but I know there isn’t really one until she can accept wearing pads but she’s too capable and would never accept them and how long until she would we can’t possibly know! Quite often we put her to bed in one set of pyjamas and we can check an hour later and find her in completely different clothing so I think pads are a no go at this moment.

 

[canary]

From the sound of it I would think it extremely unlikely that your grandad will be able to look after your gran anymore - I think it more likely that he will need looking after himself.
Once incontinence starts it doesnt stop, Im afraid, so this is a permanent state now and I do think it important that you ask her GP to refer her to the continence clinic. I also think that it is time to organise some help in the form of carers. I know she wont want them - they never do, because they are completely unable to understand that there is something wrong with them, but you may find that professional carers can get her to do things that you cant.

I would also start looking at care homes. Incontinence is often the line in the sand where family just cant cope anymore. Ignore the family members who dont want her to move into a care home - if they are not involved in her care then they have not earned the right to question your judgement.

 

[Swansea89]

Should the hospital not have a duty of care to both my grandad and gran? They are completely aware of the situation but don’t seem concerned at all. The hospital are talking about a package of care which would mean a 30 minute carer call in to see my grandad is up and dressed in the morning but that is it! Although my grandad has gone downhill in the last 3 days so whether that is still the plan none of us know. My personal opinion is that if they send him home... 2 people suffering with dementia can not be left alone the majority of the time surely?
My mum was thinking the hospital may say look enough is enough the decision has been taken away from you and we say care homes are needed and it would solve same major family arguments that are going on but that has not been the case.

I’ve said for a number of weeks my gran needs an outside carer, we have been unable to make her wash since she’s been living with us and to be honest I don’t think she washed while living in the annexe so it’s been many years since a bath or shower was taken. We spend so much time at the hospital with my grandad that we have to pick our battles. I think an outside may be able to be more to the point and abrupt with her, maybe making it more clear that she will be washed rather than it being a choice. I find it very difficult to be that hands on and personal with my own gran.

 

[try again]

You must contact social services and get an assessment for them and also a carers assessment for you and your mum. At the end of the day, theirs is a legal responsibility. I think like the others, it sounds as though it is time to look at care homes.

 

[Duggies-girl]

Other members of family would like to wait it out and see if my grandad can recover enough to go home and be carer to his wife and are very much adamant neither of them ever go in to care but currently he’s in hospital thinking he’s at work and is very confused himself! They all think my gran behaves this way because my grandad is in hospital but I’m not so sure she’ll be any better once he’s home if he does ever come home.


@Swansea89 Are these other members of family willing to take on caring for your grandmother, unless they are then they should have no say in the matter. Your mum and you are doing the caring and it is up to you to decide.

I hope you get something sorted out as the situation will not improve. Your poor grandad has probably been covering for your grandmother and now he is ill and should not be expected to go back to looking after your grandmother. It is all very sad in the end but I think the time has come for some big changes to improve your and your mums home life. Your poor mum is probably stressed out if she is working 5 days a week and you deserve a life of your own as well before it all becomes intolerable, if it hasn't already.

You are too young for this.

 

[kindred]

Should the hospital not have a duty of care to both my grandad and gran? They are completely aware of the situation but don’t seem concerned at all. The hospital are talking about a package of care which would mean a 30 minute carer call in to see my grandad is up and dressed in the morning but that is it! Although my grandad has gone downhill in the last 3 days so whether that is still the plan none of us know. My personal opinion is that if they send him home... 2 people suffering with dementia can not be left alone the majority of the time surely?
My mum was thinking the hospital may say look enough is enough the decision has been taken away from you and we say care homes are needed and it would solve same major family arguments that are going on but that has not been the case.

I’ve said for a number of weeks my gran needs an outside carer, we have been unable to make her wash since she’s been living with us and to be honest I don’t think she washed while living in the annexe so it’s been many years since a bath or shower was taken. We spend so much time at the hospital with my grandad that we have to pick our battles. I think an outside may be able to be more to the point and abrupt with her, maybe making it more clear that she will be washed rather than it being a choice. I find it very difficult to be that hands on and personal with my own gran.

I don't think the hospital has a duty of care of the kind you mean but there are usually social workers attached to the hospital, ask if they have them and ask for a best interests statement for your grandad. In my case, the hospital social worker did the best interest statement for my husband that a nursing home was needed and he could not be cared for at home. There is no way your grandad should resume responsibility for his wife, this is all too much. Usually there are quicker to think care home if violence or aggression is involved but here surely health and mental health are involved. The situation you describe is intolerable. warmest, Kindred.

 

[canary]

The hospital SW will only be looking at his needs - not the fact that his wife needs looking after.
Your best bet is to contact Social Services for a new needs assessment for your gran - and stress that this is urgent as her main caregiver is now in hospital and will be unable to hare for her now. Im assuming that a care home would have to be financed by the local authority, so you would need to work with the Social Services.

 

[Swansea89]

My mum is in touch with the social worker regularly but we have to beg for help but it’s usually when we are at crisis point.
Apparently another assessment of needs won’t be done until or if my grandad comes home as the hospital will be assessing his needs currently. We got offered an emergency respite care home for my gran when my grandad was first take in to hospital 7 weeks ago but no one did want it for my gran, where as a week or two later I did think it was necessary.

No other family members want to take on a caring role. We do beg them to take my gran all the time so once a week we may get a couple of hours off.

My grandad was taken in to hospital due to violence and aggression, he was threatening to kill people, this is how we found out about the psychosis which is currently under control but he is currently having moments of normal behaviour and moments of thinking he needs to phone the police because he’s been abandoned or because he’s stuck at work. The hospital don’t seem to be concerned about this the last couple of days and are sending him home for an over night stay Monday to see how him and my gran get on together for 24 hours. If it goes ok he’ll be discharged Thursday.

Me and my mum have had a huge disagreement as I said I did not want to be doing personal care, be a full time carer or be cleaning up urine and poo on a daily basis, I basically said I think they now NEED a care home so my mum is talking about not working to be home with them which is totally not going to work out financially.

I am the most hated person at the moment because I’m the only one who appears to think this does not work.

 

[Duggies-girl]

Yes I agree with @Normaleila I would say the same thing. Go and do your thing whatever it is. Your gran is not your responsibility and your mum needs to start looking at care homes.

I am saying this as a mum of a 25 year old and I would tell him the same thing.

 

[Rosettastone57]

Hi Swansea89
You are right and the rest of the family are wrong - or if you want to be generous they don't realise how bad the situation is.
Social services have the duty of care and you must make it clear that you won't do the caring any more. The next problem is that if you withdraw care your mum says she'll give up her job and do it - which you don't want and which isn't practical. Is this just a threat or would she actually do it?
I'm old enough to be your grandma and I don't think you should be guilt tripped into this. Walk away if you have to - go on holiday, sofa surf, go to university, get a live-in job as a nanny. It's not selfish - it's vital and it may be what's needed to get proper care for your grandparents.
It's not fair and I'm angry on your behalf. Stay strong.

Hi Swansea89
You are right and the rest of the family are wrong - or if you want to be generous they don't realise how bad the situation is.
Social services have the duty of care and you must make it clear that you won't do the caring any more. The next problem is that if you withdraw care your mum says she'll give up her job and do it - which you don't want and which isn't practical. Is this just a threat or would she actually do it?
I'm old enough to be your grandma and I don't think you should be guilt tripped into this. Walk away if you have to - go on holiday, sofa surf, go to university, get a live-in job as a nanny. It's not selfish - it's vital and it may be what's needed to get proper care for your grandparents.
It's not fair and I'm angry on your behalf. Stay strong.

Totally agree with other posters. Don't let yourself be emotionally blackmailed into carrying on with this unreasonable level of care. You are entitled to a life of your own you are far too young for this sort of responsibility and with your grandmother only being 76 she may well carry on for many more years do not waste them looking after this situation. I'm not saying you should abandon wanting to get help in the situation you clearly have a lot of love for your grandmother but the way forward is to progress this with social services. And as other posters have said to be frank it sounds like a care home would be the only option . The whole business of outside carers and getting the person with dementia to cooperate with them can be a nightmare in itself. With my mother-in-law although she didn't accept the carers she saw them as a social event we had the same issues with washing she never bathed for years. It wasn't until a crisis occurred and she had like your grandmother accidents all the time she went into hospital. We just knew then that the time was right for her to go into a care home. As other posters have also said be strong

 

[canary]

If there is any problem while he is there (especially during the night) and he becomes violent dont hesitate in calling the police or the paramedics - they will send in a report to SS and will back up the need for a care home.

Please dont be blackmailed into caring. No-one should be forced to care - it is the duty of SS not the family. In fact, I think in your position I would be tempted to find something that will keep you away from home all the while your grandad is there
I think that even if your mum gave up work to look after your grandparents full-time, she would soon find it untenable.

 

[cuppatea]

Oh you poor thing, I feel so sorry for all you are going through and all the hard decisions you have to make, it seems you and your mum are on your own. You have to be very firm and determined - tell the hospital you can't care for your grandad with his psychosis and anger issues, it's just not safe. Pester the social worker about both of them, they both need care and fast. Half an hour a day is not enough! I agree with the above replies, I think they need full time care. Don't be ashamed to say it, as others have said, we all think we can manage care on our own, but the sweet little grateful old person we imagined looking after is sadly a long way away from the world of dementia. Is there a dementia team in the hospital that you can talk to? Talk to anyone and everone, ward sister, nurses etc and make yourself clear, you can't take on the burden of care. Good luck and keep posting.