Worried about my mum/gran (carer/patient)

[ChrisScotland]

Hi, not really sure what advice I'm looking for, just want to get some things off my chest and get any thoughts/opinions... Apologies in advance for long post, thanks in advance if you read it all.

My gran has dementia. She lives alone, but her daughter (my mum) lives very close (<1 minute away). She has a son too, but he has his own issues and can't be relied upon as a carer.

My gran's condition has been deteriorating a lot over the last few months - she's more or less bedridden, very confused (not recognising her own house, not knowing the difference between day and night, unable to communicate well, requiring lots of attention) and is unable to go to the toilet/commode by herself (and she needs to go frequently).

We have carers coming in twice-daily (9am-1pm and 5-7pm, soon to change to 10am-noon, 2-4pm, 6-8pm), but I increasingly feel like it's not enough. My mum has been very reluctant to get any carers and tries to do as much herself as possible. She sees having anyone else take care of her mum as some kind of failure, yet when she takes care of her she's frequently in tears and appears like she's ready to snap (I understand how difficult/frustrating it is, but if it were a carer raising their voice to my gran in the same way I wouldn't want that person involved in her care). My mum's also keen to leave her alone at times so she doesn't get used to having someone around all the time (I think she's beyond that stage and it's a disaster waiting to happen). Someone does sleep in her house every night, but that person inevitably gets a very broken sleep.

At the moment I'm unemployed (only as of last week), but when I find work my gran's going to be left alone a lot more (2 hours at a time during the day) and I don't think it's a good idea at all. Additionally, I'm really worried about my mum's sanity. Any mentions of respite or other options just result in my mum being in tears (her dad had dementia too, and we had pretty bad experiences of a care home and a hospital - she also always refers to Panorama-type programmes about abuse in homes. I know it happens, and it isn't acceptable, but it can't be the norm?).

The current situation just doesn't seem sustainable, and it isn't fair on anyone (my gran included). I've no idea what I can do to help; I care for her when I'm here, but increasingly that's really difficult for me as a lot of the care she needs is very personal and I'm not best placed to deal with it. I want to do whatever I can to lead my mum down the best route for everyone, without her feeling like she has failed (I really don't believe she has in any way).

Thanks.

 

[Butter]

Welcome to TP ChrisScotland. You seem to have your head well round the situation. It is difficult when you can see all the problems but can see none of the solutions.

You'll find plenty of people here in the same boat.

Sometimes the primary carer - ie your mum - feels obliged to run themselves nearly into the ground and it can be very hard to watch. I wonder if you can begin to talk to her as you have talked here? Obviously she wants the best for her mum. Would she see that having help - even the help of a carehome - would help her help her mum for longer and better than she ever could on her own? A good local carehome -where you can visit all the time - can care far better for people sometimes.

Your mum seems to resist admitting she is not superwoman - there are many many people on here who do the same - perhaps they will come along with more ideas on how best to help.

 

[Polly1945]

Welcome ChrisScotland

Your gran is very lucky to have you care so much about her. It's an awful disease to cope with and I can understand how difficult it is for your Mum too.

I've looked after my 97 year old Mum for nearly five years, until last Dec. when I reluctantly had to admit that she needed 24/7 care, although she is no-where near the stage that your Gran appears to be.

There are some really lovely care homes out there and I'm so grateful for the carers in Mum's home. They are really kind and have lots of things going on. A few months ago, a trip was organised for quite a number of the residents to go on a canal boat trip and a picnic was had on-board (the weather was too bad to sit outside) but it was fun.

Your Mum will not be able to keep on coping without it affecting her health and then your Gran would probably be put into a care home.

I feel guilty about my Mum going into a home and often think of ways that she could come back to be with us, but apart from bringing her home for a whole day, I don't want to give up her room at this Home. (There is a long waiting list)

How old is your Gran? Has she been prescribed any medication for her dementia?

Please keep on this forum as I am sure you will find lots of help. We all understand just what is involved and that in itself is a great relief, sometimes you can feel very alone coping with this illness.

Keep in touch

Love
Pauline

 

[ChrisScotland]

Thanks for the very quick and kind replies.

@Butter - I have tried to have this conversation, but it always leads to tears and no conclusion.

@Polly1945 - She's 86, not on any medication (despite a long list of complaints). The care home your mum's in sounds lovely. I know my mum has a very negative image of them (as I mentioned, some of it justified based on previous experience, but much of it based on awful things reported in the media).

She also has an image that my gran is very unique and that a carehome couldn't cope with her needs (I can somewhat understand where she's coming from - my gran isn't mobile, she doesn't like TV/music on, she's a fussy eater - sadly, she wouldn't be able to do the kind of things you mention your mum's home offers). I've often tried to make the point you did (if my mum makes herself unwell, what happens then?), but obviously that's difficult to talk about.

 

[Noorza]

Could you encourage your mum, without any pressure to use them, just to view and visit a few locally? Just get her to look without any pressure to put mum in one, once she sees some decent ones she might, just might, start to consider it.

 

[loveahug]

to be honest, Chris, I would try and persuade mum to check out and select one or two homes 'just in case' she has an accident or suddenly gets ill and then things aren't rushed with Gran getting 'plonked' into the nearest CH with a bed space. That way there's no pressure at all about deciding and moving Gran now, but at least a sudden choice can still be an informed choice.

Good luck, your Gran's lucky to have such a caring family.

x

 

[wobbly]

Hi and welcome from me too....I know what you mean!! Sometimes things just need to come to a head...I told my mum I couldn't cope with having dad as he was with Alzheimer's and an ill Mum from her caring for him. Without sounding as if Im criticising your mum it sounds as if she is carrying on for her sake, which is completely understandable, we all want to do our best, keep them at home etc but it sounds like your Gran needs a lot more care than your mum accepts, and she needs to see she can't provide it. So Gran is the vulnerable one and needs her needs met.....so easy to say isn't it...my heart goes out to you and your mum and of course Gran, this whole disease is awful. Your Mum needs looking after too bless her.....

 

[angelface]

Do try and look at a few care homes. Your grandma sounds just like my aunt , and tho' I don't think her CH is very good, they cope with her OK.

This particular CH has several main rooms, so if there are entertainers/TV on that my aunt does not want, she goes to a room without them.

Food is an issue with my aunt, she is also very picky. She walks all the time, so the CH is OK with her wandering about eating a sandwich or cake.

The main thing is to visit, explain how things are, and see what they suggest.

 

[chris53]

Hello Chris, and a very warm welcome to Talking Point, so pleased you have posted and hope we can be of support to you when needed, please try to get your mum to try, if even for a couple of days, respite for gran, can understand just how reluctant mum is about this, especially with your grandad sadly having dementia, but it will get to a crisis point where your mum rather then gran may end up in hospital, because of the stressthen who is going to look after them both my heart goes out to you as you both have been there with grandad, I guess your gran had your mum's help and would have done as much as possible not to go into meltdown, but the guilt monster appears where care homes are even thought of, maybe mum would like to read some of the posts here, as there are so many many positive posts (and informative factsheets) when a loved one needs to go into care, it is not a failure, far from it please do keep posting here Chris, we are here anytime day or night. Take care, best wishes - Chris x

 

[ChrisScotland]

Thanks very much for the kind words and advice. Genuinely touched by it, and just typing it all out has helped me in some way I think.

I'll certainly go down the 'just in case' route with my mum, and try to do my own research on local care homes first to try to see the better ones.

My uncle (her son) is visiting today, and is visibly at breaking point within a few hours. It's so sad, they used to get on so well

Will post an update when I have one.

 

[ChrisScotland]

It's strange how quickly things can change. I can't really believe my first post was less than a week ago.

My mum and I are going to look at places for respite today while her carers are in. This week has just been breaking point. We've had so many toilet problems, so many broken sleeps and yesterday while I was caring for her she started to get quite nasty when I wouldn't take her home (she is, of course, in her home) and seemed very upset that we had moved into someone else's house. I can't imagine the fear she was experiencing, but it's the first time I've felt completely inadequate to look after her. Also the first time I've really cried for a long time (I'm usually the strong one...).

Any tips on choosing places for care would be massively appreciated - there are so many, and I'm sure good and not so good.

 

[Jessbow]

Concentrate on the people not the look of the place- I consider the income of the home is better spent on the residents in the sense of plenty of good staff, rather than vases of flowers everywhere and few staff.

Don't dismiss someone if its a bit shabby, the care might be great!

 

[rajahh]

The home which I have chosen for my husband was full of smiles when I first visited

The staff smiled at me , at each other, at the residents, and at the manager, the manager smiled at everyone. The residents who were alert smiled at the manager, the staff, each other and me.

The staff to resident ratio was very good and I think that is why there were a lot of smiles.

The manager went into a room where the resident had chosen to be on their own , and kissed the resident. He did not do this to everyone so to me that was a pointer that each resident was regarded s an individual and not treated the same.

My husband is a very asocial person and I felt he would not be forced to become someone he did not want to be. Or to take part in an activity if he did not want to

 

[FifiMo]

Chris,

If you put your gran's general location on your profile you may find that someone in that area knows of a good home. Whilst you can't name homes on the main forum they can send you a private message if they know of any such place.

Please mention to the home that you are looking at respite with a view to it becoming permanent. That way they should show you different types of rooms. Respite rooms are often the smaller rooms as the respite is only for a week or two so you don't need a lot of stuff with you. You will want your mum to see the difference straight away in case she is put off.

Is your gran unable to walk at all or is she choosing to stay in bed because that is where she feels safe? Speak to the home about her needs. Ask if they have special chairs in the lounge that gran might spend some time in. Look out to see if there is a quite lounge too for example. Ask the care home if they will leave her in bed or if they will get her up and dressed and sitting in a chair perhaps. Very often it is the latter because it is easier for the staff to watch over them if they are in the same place. For this reason, look out for people sitting in wheelchairs...this really annoys me as it is bad practice to leave someone sitting in one for hours on end.

Oh and never say never. I have seen people change over night in the right care home. My mother, the one who swore the only way we'd get her in a home was in a coffin, loved her place. Things going on, even if she isn't participating, can help with fears about strange places or being on her own etc.

Another couple of things to look out for is lack of hygiene and lingering bad smells ...ca mean pads are not changed often enough for example. The staff and residents and other relatives...see how they gel together. Is the place happy and relaxed? You will know instinctively if the place has a good vibe , afterall, these folks will become your extended family! One important thing to find out is whether the place provides wholistic care right through to end of life. The last thing your gran will need is to have to move, especially if she has settled in ok.

I don't know how your gran's care is to be funded but unless you are all awash with money, please fully understand how this would work and do not under any circumstances agree to pay top up fees without knowing precisely what you would be taking on. If gran is to be LA funded then you will need to get a social worker involved from the local council.

I wish you luck on your quest today and that you find somewhere that your mum and your gran will be content.

Fiona