Elderly sick relative

sullivlo

I apologise if this is in the wrong forum - feel free to move to somewhere more appropriate. Also apologies in advance - this may be long, ranty and confusing.

My great aunt has dementia. She lives with us in a self contained unit in our garden. Access to it is via our house. She is early stages - capable of independent living but with assistance. She gets carer hours - two 30 minute blocks a day. However the carer hours are hit and miss, and a lot of what she needs help with can't be dealt with by the carers.

She is under the care of a geriatrician for her dementia, and she is under the care of a nephrologist for kidney issues. She is also diabetic, has gout, blood pressure issues, cholesterol issues and early stage osteoperosis.

On a good day she takes her medication without prompting, she'll eat three meals a day, she'll watch TV, she might go for a walk, she'll do a wordsearch or do some colouring in.

On a bad day... things are different. She might take her medication and then forget to eat, so then she will vomit or get weak. She might forget to take her medication, eat, and forget that she has eaten so she will eat again. She got through a box of 48 weetabix in 3 days once because she had forgotten that she had breakfast. The same happened with ice cream - 7 cornettos. She might forget to take her medication, eat as normal, and then take all of her medication in one sitting. She might take whatever medication takes her fancy at a given time and end up taking a diuretic at 10pm and then spend half the night peeing. This list is longer but I think you get the picture...

Last week she was very confused. I popped down to her after work and she was sitting on her couch with her trousers and underwear around her knees, unable to tell me why and not really engaging in conversation. I called d-doc and we brought her to A&E - for her to go to the hospital she must have felt really crappy as she hates hospitals with a passion. They did some tests and diagnosed a UTI and sent her home.

I'm going to sound like a horrible person right now but we didn't want to bring her home. Not for ourselves, but for the entire situation. She required more assistance than we as a family and her carers could provide. We pleaded with the doctor to keep her but he said she could go, and once she heard that, she wasn't staying, even after he changed his mind and told her she had to stay.

We got a call the next day requesting that she was brought back in urgently as she had a bacterial infection in her blood and was at risk of sepsis. She refused to go back initially, but I managed to get her to go. It was hard, but we got there. They said she would be in at least a week for IV medication.

Now the problem. They have told her that she can go home on Thursday night/Friday morning. We aren't in a position to take her. That may seem heartless but the other people in the house have full time jobs and can't be in the house to watch her. The only person who is there mostly is my gran, but she's 79 and legally blind. If anything were to happen, she wouldn't be able to make a phonecall in an emergency.

I know that I should take time off work and defer my studies to look after her, but I can't right now. I know that makes me selfish.

We have tried speaking to the hospital, but there doesn't seem to be any communication on their end. They seem to be treating the patient and current problematic symptoms, rather than the patient as a whole. For example, I had to persuade her to change her underwear on Saturday, and she had been wearing it since Thursday. Ordinarily it's someones choice if they want to wear dirty underwear, but she is being treated for a UTI - hygiene is vital. She doesn't make correct decisions and we can't be there to make the decisions for her.

The hospital don't seem to care and want to discharge her as normal. She has been told this and is now just counting down the seconds. In fact I wouldn't be surprised to learn that she tries to sign herself out at some stage.

Where can we turn? Short of making her homeless, is there anything that we can do?

It's taking its toll on the family. I think we're all a little bit stressed so not thinking rationally.

Loveinapril

This sounds so tough, I am sorry. Have you tried to liaise with the medical social work team? I wonder would they offer some advice. They have definitely come up against this in the past. My husband's granny has just gone into a home following a simiar situation, dementia just got worse and the family at home just couldn't give her the care she needed. She was in hospital with an unrelated issue and the family just said they could not take her home as she was at risk if something happened.

sullivlo

We're trying to get in contact with the social worker on her geriatrician team, but I think they only work in the clinics/out patients rather than with inpatients.

Part of the problem is that she wants to be at home, and if that's what she wants it is what the doctors will want.

Hopefully the social workers can sort something out. We spent yesterday cleaning her house. It's not long since we cleaned it fully, but it was so, so dirty.

readyletsgo

Been through this with my dad. It's incredibly tough on you and your family. We had carers from 2 companies coming in 4 times a day as I just couldn't do nights anymore. Sadly last year it go way too difficult after 7 years of it so myself and brother looked into nursing homes.

You really have to do this yourselves, research every home near you. Some are ok, some are terrible. Apply for the fair deal now (yesterday if you can) as it can sometimes take a while and nursing homes are expensive no matter how good or bad they are.

Local health nurse & local GP will have some information but not much to help you in this very difficult time.

If you do find a nursing home then just be aware, it's going to be a difficult couple months at the start, for all of you. These things take time. But you have your own life to get on with too, it's not selfish, you have done everything you can.

It's not much but I hope the above helps a little.

Best of luck.

Edit:

'Part of the problem is that she wants to be at home, and if that's what she wants it is what the doctors will want.'

Just an FYI. You can bring up furniture from her home to the nursing home to make her room like her home. We brought up a chair and table and radio for dad, familiar things he uses every day.

sullivlo

How does the fair deal work? Is that where you get a loan to pay for the nursing home from assets owned by the person? In that case, she has no assets. Maybe a few hundred euro in the bank but nothing that would be enough to pay for a home.

I know that the carers think that we're lazy or whatever. They see us in our home sitting watching TV while they go down to sit with her. But they get it for 60 minutes a day. We get it for the other 23 hours. As a family, we can't go away because she doesn't settle when there's nobody in the house. We can't leave the house unattended for too long because she'll answer the door to strangers and invite them in.

It's not the comfort thing that she wants from being at home. She just point blank refuses to accept that she needs help. I can't explain the level of resistance that she had (and still has) towards the carers coming in to help her out. She doesn't think that she has a problem and that's what she tells the doctors.

In A&E last week she had vomited all over herself. She was in a hospital gown. When they told her she could go home and that she should get changed, she tried to just put on shoes and trousers. When we told her she needed something on her top half she tried to put back on the sick covered clothes - that's not a normal reaction/decision, but it's the level of decisions that she makes.

Sorry. I'm ranting. I'm just a bit stressed by it all. I stood in A&E from 7pm until 3am Wednesday night/Thursday morning, and I was back up at 6 for work. Had to leave work to bring her back in to the hospital and I went straight from work to the hospital again that evening. I was working late on Friday to catch up on what I missed on Thursday, and Saturday/Sunday were spent running from A to B doing the things that we had to put off doing Wednesday/Thursday/Friday. I have an assignment due for college on Saturday and I planned on doing it yesterday - it was 7.30 before I got to my computer, and I've to go to the hospital again after work today.

freshpopcorn

I'm not sure who you need to speak to either the local district nurse or the discharge coordinator in the hospital and you need to tell them your not able to take her home yet and ye need to sort out something more permanent and you should ask for a few weeks convalescents(not sure of correct spelling) for her in a local hospital or nursing home. This will allow you time to get things sorted.

coffeyt

Hi op sorry to hear of your situation, is there any hospice/respite hospitals in your area. I know near us there is one where my nan went when her Alzheimer's became too advanced that she required 24 hour care while we looked for a nursing home for her.
I do know they also take people directly from hospital for a week or more who are not sick enough to be kept in hospital but for whatever reason cannot be cared for at home. Somewhere like this may be suitable to buy you some time to look into more options. You should check with the hospital if they can recommend one.

readyletsgo

The carers job is to give you guys a break for 30/60/90 whatever minutes each day. They know you are doing all the work and caring all of the other time. The carers who drops in to do (most of the time, great work) gets to leave, remember that.

If you need more help from carers, go to the local health nurse and request it, you might get an extra half hour, for whatever is needed, but be assertive.

Don't ever think you are putting a carer out, they are being paid (albeit, not a great wage, but still) to be there, it's their job.

The fair deal will pay most of the nursing home, I think they take half of your aunts weekly pension. The rest the govt. pays for. Can be up to nearly €5000PM for each person without fair deal. Believe me, I know.

Penn

Obviously without wanting to know too much about your personal life;

sullivlo wrote: »

I stood in A&E from 7pm until 3am Wednesday night/Thursday morning, and I was back up at 6 for work. Had to leave work to bring her back in to the hospital and I went straight from work to the hospital again that evening. I was working late on Friday to catch up on what I missed on Thursday, and Saturday/Sunday were spent running from A to B doing the things that we had to put off doing Wednesday/Thursday/Friday. I have an assignment due for college on Saturday and I planned on doing it yesterday - it was 7.30 before I got to my computer, and I've to go to the hospital again after work today.

Where are the rest of your family? This woman is your great aunt, and you've only mentioned your grandmother who is legally blind. Where's everyone else? Parents, uncles, aunts, cousins... Fair enough she lives in a unit attached to your land or accessed through your house, but the rest of your family need to help out too even just in the interim until perhaps a place in a home is organised. This shouldn't be all falling to you especially given the above quoted section of your post and how much you have on yourself.

My grandfather was infirmed for the last few years of his life so they moved him in with my parents. Even though my mother did the bulk of the work, everyone else helped regularly to help carry the load. My mothers siblings, my siblings and I, our cousins... We all did what needed to be done and when someone couldn't do their share for a valid reason, someone else stepped in. It sounds like you yourself are being run ragged, but the rest of your family need to be more involved, even just in the short term. It shouldn't be up to you to sort all this out yourself.

DoozerT6

What a stressful situation, I'm so sorry.

Please speak to the Discharge Planning co-ordinator at the hospital - this team might have a social worker who can help you with your options. tbh I'm surprised the hospital haven't mentioned this to you already. Failing that, ask to speak to ANY of the social workers in the hospital who could advocate on your behalf. The hospital's website might have direct numbers for these departments. Or ask where the SW department is in the hospital and physically go there yourself if you have to.

Best of luck.

amtc

From my experience people in such situations are literally not let home. My grandmother's sister was moved to a semi nursing home hospital from August to March last year and an elderly family friend was there too. Neither under Fair Deal but referred by public health nurse.

One thing I would say in general is that it's important to take advantage of respite. My grandmother ( she doesn't live here) gets 2 hours a day and 5 hours in a Friday plus four 2 week breaks, but my aunt won't leave her. Apparently no one can care for her as she can.

Addle

I think your level of responsibility will be/should be based on why she's living with you to begin with?

sullivlo

Addle wrote: »

I think your level of responsibility will be/should be based on why she's living with you to begin with?

She's always lived in the family home. She has never lived alone. Even before dementia set in she was always in need of extra help. The issue since the dementia is the extra poor decision making and the forgetfulness. She was always a bit odd.

As for other people in the family... They care, but there's other stuff going on too. We have a very small family. One uncles wife just had major surgery so he's tied up with that. The other uncle works ridiculously long hours and simply isn't around. Mum is around and willing to help but she has health concerns too. I'm essentially the only living relative who is a) of age and b) in the country.

So the majority of the care falls to me and mum, and it's not fair for all of the burden to fall on her.

I'll get onto the hospital tomorrow and try arrange a sit down with the social worker, and we will get on to the district nurse and see if they can offer any more help.

Ursus Horribilis

Sullivlo, I'm sorry you're going through all of this. I don't have any practical advice to give you other than this: Say no to everything. Don't let them think you're capable of looking after your great aunt at all. If they see even a chink of light and anyone who can take the burden at all, you're fecked.

notsoyoungwan

Hi op

I have experience of this from the other side. Ask for a discharge planning meeting where you can air your concerns. Ask that the medical social worker be present at that, as well as one of the doctors treating her. And ask if they've assessed her capacity to make the decision about returning home. That last bit is crucial.

Skibunny77

Op, I work in this area. Some of the comments on this thread really concern me - there is a widespread perception in Ireland that older people can simply be sent to a nursing home against their will. First off, legally, a person can only be placed in a nursing home with their consent or if they have been assessed by a geriatrican and are found to lack capacity to make their own decisions. It isn't as simple as just ensuring someone is physically well, their emotional needs and happiness are just as important . Secondly, have you discussed your concerns and wishes with your aunt? A professional won't and shouldn't do that for you. As a family, you need to have a conversation. She is the patient and is entitled to all information about her care.

If your aunt has rights of residency/name on the deeds, she is fully entitled to return home without your consent or agreement. A UTI can make someone temporarily delirious or increase dementia for a period of time, she possibly has improved since - given her awareness and fixation of her discharge date, it seems that may be the case here. I would agree with meeting a social worker but please remember, their role is to advocate for the wishes and needs of the patient. An increase in home supports, access to day centre, etc may all help support your aunt in the community. Outline your specific concerns and give examples of specific risks, but remember this is your aunt's decision to make until such a time as she has been found to lack the capacity to do so.

Skibunny77

Op - also request an Occupational therapist functional assessment and a care planning meeting. Your aunt is entitled to be at any meeting about her care needs - which goes back to my last point - how aware is she of your feelings on her discharge? Finally ask about the hospitals complaint policy if you have concerns about the first failed attempt to admit her/ any other aspect of care.

Teyla Emmagan

My Granny gets UTIs OP. They makes her exceptionally confused and irrational. She's like a different person. And then it clears up and she's a million times better again. So don't underestimate the UTI. Long term you need another plan but at least short term things should improve again.

Mooooo

I don't know about the fair deal scheme, but regardless of the rest of the families circumstances you should have a meeting with all of them to discuss your grandaunts care and it's funding. Our grandmother had Alzheimer's and stayed with us and all our aunts and uncle at various stages, unfortunately when she went to walk out onto a motorway to go home from an aunts they had to decide to go for a nursing home, at the time no scheme so funded by all the family. Find out as much info as you can to see the options and try and do your best by her is all you can do.

sullivlo

Skibunny77 wrote: »

Op, I work in this area. Some of the comments on this thread really concern me - there is a widespread perception in Ireland that older people can simply be sent to a nursing home against their will. First off, legally, a person can only be placed in a nursing home with their consent or if they have been assessed by a geriatrican and are found to lack capacity to make their own decisions. It isn't as simple as just ensuring someone is physically well, their emotional needs and happiness are just as important . Secondly, have you discussed your concerns and wishes with your aunt? A professional won't and shouldn't do that for you. As a family, you need to have a conversation. She is the patient and is entitled to all information about her care.

If your aunt has rights of residency/name on the deeds, she is fully entitled to return home without your consent or agreement. A UTI can make someone temporarily delirious or increase dementia for a period of time, she possibly has improved since - given her awareness and fixation of her discharge date, it seems that may be the case here. I would agree with meeting a social worker but please remember, their role is to advocate for the wishes and needs of the patient. An increase in home supports, access to day centre, etc may all help support your aunt in the community. Outline your specific concerns and give examples of specific risks, but remember this is your aunt's decision to make until such a time as she has been found to lack the capacity to do so.

Skibunny77 wrote: »

Op - also request an Occupational therapist functional assessment and a care planning meeting. Your aunt is entitled to be at any meeting about her care needs - which goes back to my last point - how aware is she of your feelings on her discharge? Finally ask about the hospitals complaint policy if you have concerns about the first failed attempt to admit her/ any other aspect of care.

Thank you.

Our issue lies in the fact that she needs a lot more physical care than she needed when she was assessed by the district nurse. We simply cannot commit to the extra time needed to help her out. That may be heartless but we can't do it. She can't even do her own food shopping - she went to the shop last week and bought 6 bags of apples to feed her for the week! She can't cook for herself. We get meals on wheels but that's 4 days a week, and we can't guarantee that she will eat them on the day, and if she doesn't she won't store them correctly. She has a fridge and a freezer but we need to check daily if she has moved her frozen food into the fridge. She doesn't see an issue with eating gone off food, which in turn makes her sick.

Mentally she has also declined. Yes she went into a delerium with the infection, and yes that seems to have cleared up a little. She has frontotemporal dementia and this affects her decision making. In a discussion with a stranger she will come across as being just a happy old lady, but her poor decision making has declined and we feel that she is a risk to herself. One small example - she set her toaster on fire last week, but didn't see it as an issue and she nearly electrocuted herself trying to fix it. This was in the space of an hour and a half when there was nobody there. She gets 2 x 30 minute carer hours a day but that's not enough. She won't take her medication without prompting. She won't take her medication correctly - if we get them in the blister packs she empties them and puts them all in one tub. Then she'll just take medication randomly. The carers cannot give her medication, they can only prompt her to take it. She takes meds 4 times a day, which means that unless someone from the family is there to prompt her those other 2 times, we can't be guaranteed that she will take her meds.

But yes. Our issue is that we know that we can't just sign her in to a home. She point blank refuses to go into a home. She refuses day care. She even turns the carers away if someone from the family isn't there. She doesn't think that she needs help, so she tells the doctors and nurses that she is great and they think she is great and they send her home. Yet we're the ones that have sleepless nights because she's puked after eating gone off food, or she's eaten so much sugar that she's close to a diabetic coma.

We just can't cope with the extra level of support that she needs. We were cleaning her place last night and I can't explain some of the disturbing things that we found. Her environment is not safe but she thinks it is so whilst she is still of "sound mind", there's nothing that we can do.

Skibunny77

Op, request a capacity assessment. Share your concerns about her fire setting/lack of risk awareness around appliances.