Mum was discharged from hospital and it's all gone wrong

[drzeus]

Had a horrific weekend - brain dump and I hope someone can offer a shoulder to lean on or some advice.

So, following my previous threads, latest one www.mumsnet.com/Talk/elderly_parents/2117117-Care-package-help, mum is now home. Came home on Wednesday. Discharge from hospital horrendous (I won't go into that here though as its a separate issue.)

Social Care arranged the care package: x2 Carers coming in x4 times a day. On Friday late afternoon, I got a call from Dad in tears saying he couldn't cope. I drove over there (I'm about 45 minutes away by car) to find Dad, Carers and paramedic there. What had happened was mum had said that she needed the loo, forgetting that she can't really stand following the stroke. Ended up on the floor. Dad rang 999 and the carers to come and help. She had really low BP. Also tummy was really distended. They settled her down in bed and left. I stayed for part of the evening but I had to go home to sort out kids.

Saturday morning she woke up really early (got Dad up) in pain and Dad called 999 again. At lunchtime the OOH doctor arrived and decided that she was a. very constipated and b. had an incredibly full bladder. Bearing in mind she's doubly incontinent it was very worrying. The doc arranged for the district nurse to come out and insert a catheter. Meanwhile me, my Dsis and DBil are all there trying to calm both mum and dad down. Carers are turning up - its bedlam. The nurse came about 4pm ish. The first catheter wouldn't go in so she had to go and get another on. Eventually this was a success. They think she has a UTI. She's also on Movicol to ease the constipation. I had dad is tears twice on Saturday (normally very restrained and calm) saying mum had been really mean to him and saying horrible things. She has Alzheimer's which seems to have got a LOT worse over the last week. He also said that he didn't think it would be like this and was finding it hard to cope. He is 88 and she is 83.

Anyway, Dsis and BIL stayed over with mum and dad on Saturday night. Apparently mum woke really early in pain again, wanting the toilet. My BIL managed to sort her out while my dad had a break (sleep and then a bath). My BIL sat with Dad afterward (who was crying again). My Dsis said that mum was making horrible comments about dad. The district nurse came and changed mums leg dressing (following an incident in hospital) and checked the catheter. My Dsis made sure she was aware that dad isn't coping although he had said he was to her (WTF). Mum seemed somewhat calmer this afternoon, but was telling me about a "bankraid in Central London that was about to happen".......

Dsis, DBIL and I have all had to leave to go home as we are all at work tomorrow. Although I work in a school and we are about to break up, I have two children to look after. (I'm desperately trying to book them into various activities for the first week).

We are all really, really worried about things, dad not coping, mum is so much worse. It's all balanced on a knife edge. Until Dad realises and, more to the point, accepts the reality of the situation we can move forward. It's heartbreaking to see them sitting there this afternoon. Dad looked broken. Mum was dozing in the chair.

Life is, unfortunately, shit at the moment.

[hellymelly]

Oh i am sorry. i have been through similar with my own parents, so i completely understand. Your Mum may well be more together when the UTI is resolved, my Mum has early dementia (post stroke damage, possible Lewy Body) but if she has a UTI then she is much more confused, and constipation can do this too.
My parents were on the edge of catastrophe for a few years, Their social worker was really worried about them, we were all worried, but we just had to wait for the storm to break. In the end my Darling Dad had a fall and was taken in to hospital where he remained until he died a year later (18 m ago). My Mum lived alone but had a few falls while he was in hospital, and then a major fall after he died. She nearly died, was in hospital for 6m, and is now in a care home. It sounds as though your Mum may be getting to the point where she isn't able to be cared for at home, but while she and your Dad both want her there, then the situation will continue. Perhaps some respite could be organised for your Dad? When your Mum's current crisis is resolved can you talk with them about what to do should things get worse? I feel for all of you, it is a terrible time. .

[JeanSeberg]

So sorry to read this. My mum passed away last year from Alzheimer's.

Would a care home be an option, even if just for a respite stay?

[drzeus]

I think DSis, BIL and I are all thinking of the care home as I don't think dad is coping. He is putting on a brave face but increasingly tearful and struggling. Mum being unkind tipped him closer to the edge. I think that he thought everything would be back as it was before the stroke when she came home. As it is, everything is wrong to her - too much clutter/too much furniture/the trees are taking all the oxygen etc. God, it's so bloody difficult, isn't it?

[JeanSeberg]

Could you arrange some visits to care homes (on your own maybe so as not to worry your dad) just to see what your options are and get the facts (costs etc)?

Would your mum be able to self-fund?

[drzeus]

We're self funding all the care at the moment anyway. I'm going to start researching local care homes on the quiet I think, good idea JeanSeberg. I am going to call the dementia nurse tomorrow morning to talk things through too.

[KatyMac]

I don't know how bad your mum's alttzeimers is - but I do know a UTI can turn a perfectly sane and fully competant person into a doo-lally disaster with aggresive tendancies

It's entirely possible that things will stabilise once this has been effectively treated. Hopefully that will enable you to make a more balanced decision

[JeanSeberg]

Also have a look at the Alzheimer's society website. They have a message board called Talking Point.

Researching homes is a good idea, there's such a massive difference between the good and not so good.

[whataboutbob]

This sounds so stressful for everyone. I feel sorriest of all for your poor dad. I agree with Jean S, it probably is time to start looking at care homes as in this present situation the set up is very fragile and even if she rallies round from the UTI, you are hostages to another thing coming in and upsetting a precarious home set up.
Also, it sounds to me as though you should look into CHC- basically the local NHS set up (used to be PCT) would fund her care. They are unlikely to just offer, but ask for an assessment. Alzheimers with behavioural changes plus a stroke sound like a lot of health needs and maybe enough to qualify. Good luck. My Dad has Alzheimers and it is hugely stressful.

[drzeus]

Thank you all for your replies, I really appreciate it.

[twentyten]

Thinking of you.

[ProfessorDent]

Agree about the UTI changing someone's moods/sanity.

If she is constipated, plenty of drink may be the answer, but I'm probably pointing out the obvious here.

Regarding care homes, I wish you luck, sounds like you need a nursing home instead (the two aren't the same, if she needs feeding it's a nursing home). You don't get any reviews for nursing homes really, carehome.co.uk only allows 'Recommendations' and nothing bad is allowed, it's a bit like the Checkatrade comments! The CQC only goes on what it sees on one of its two-day visits and does not factor in any negative comments from relatives, it's all hear no evil see no evil.

Ask around though, but more from people in a similar position, some places are great for those who have their own marbles and can fend for themselves but rubbish for more vulnerable.

[stonecircle]

Oh dear, how awful for you all. I really do agree with others that your mum needs to be in a care home at least on a temporary basis. How to manage it if she won't agree is difficult though and there does seem to be a drive to maintain people in their own homes if at all possible - even those who are self-funding.

We've just had this battle with mum (90) who has always fiercely said she would NEVER go into a care home, refusing to acknowledge that there might be a situation where this could be unavoidable. She ended up in hospital early March following a fall and had a very difficult to shift UTI which was thought to be the cause of her confusion. However it became clear that she had dementia (which has got really bad very quickly). She also lost her mobility while she was in hospital. Nevertheless, there was much talk of her returning home which we found appalling but it eventually became clear this wasn't a sensible option and we found her what seems a very nice care home. As far as she is aware she is there 'until she gets a bit better'. Could you sell respite care to your mum on this basis? That she needs looking after until she is stronger, and that your dad will end up ill himself if this situation continues?

[drzeus]

Following a horrendous discharge from hospital, its been going from bad to worse at home. Carers have been great, however, it transpires that they were drafted in last minute. "SOS" call from Social Care, according to one of them. They weren't briefed prior to mum coming out. Mum has had a UTI which is being treated with antibiotics. I went over Thursday and she was very down. My dad tho', is on his knees. He was very tearful at lunchtime. I had a call Thursday at 6pm from him in tears saying he could no longer cope. Seems that mum has been shouting at him and the carers this afternoon, and not letting him get a moments rest. We are extremely concerned for him.

Thursday night my sister and brother-in-law spoke to dad who had calmed down a bit......however......he phoned them at 5.30am Friday am in a state having had very little sleep and they drove 80 miles to their home, taking emergency time off work. He went to bed until around 1200, clearly exhausted. Carers were in as normal.

Mum didn't seem quite as agitated as yesterday but clearly something had gone on yesterday afternoon. Mum had a headache and was sick so we called the doctor. Prescribed anti-sickness medication (more bloody pills!). Had a thought later on, could have been a migraine as she did suffer in the past, quite badly. Also it was very stormy in the afternoon.

Anyway, two Occupational Therapists came round to do a risk assessment on the bed as it has bedrails. They didn't do this as mum was poorly, however, we did get to speak to them about the current situation.

The options put to us were:
1.carer in overnight - awake
2.carer in overnight - asleep
3.carer in all day - additional carer to attend x4 times to do moving etc
4.telecare sensors on bed and chair in case she tried to stand up, get out of bed

Respite care wasn't mentioned/discussed at this time. However, the above options were suggested to help in the interim and "give us space" to decide whether this would work as a home care solution or whether other options are required.

Dad was adamant that he didn't require help overnight. Option 3 was met with reluctant "agreement". Me and my sister were quite clear stating that the current situation cannot continue for the sake of all our health/stress levels. Sister and b-i-l have spent last 10 weekends staying with dad and quite frankly are also exhausted. I'm trying to get over there as much as possible, whilst looking after two children. Luckily they were on a holiday course for the last two days.

Sister then spent (frustrating) time contacting duty social worker et al to try and sort out something. It was suggested by care agency that x2 3 hour slots could be arranged at short notice (from Monday) with someone being available morning and afternoon but giving them a bit of time to be alone during the day. This has been agreed (although at the time of writing this, dad doesn't know as he's been asleep). He said at lunchtime that he was finding it difficult processing everything as there is too much going on. He got really confused when talking to the OTs and was clearly struggling. I'm concerned as, yet again, we've dropped everything to get over there and I think he starts convincing himself that he can cope again.

Saturday she seem a little better......until late afternoon, when she started got extremely agitated at everything/everyone and ended up shouting at us to "Shut up and leave her alone....". I had to take my 12 year old and 10 year old sons with me. They witnessed the episode which distressed them a great deal. I had a long chat with them last night and explained as best I could. I have tried to shield them from the worst of it. Oh and Dad spoke to BIL about the telecare sensors saying he didn't want them as he thought they were "unnecessary". When I left with the boys, Dad was sitting on the sofa (having hid during Mums rant) looking totally broken. I'm worried that once my sis and bil go home (which they have to do today), it's all going to implode again. Part of me says it has to go wrong before dad will accept that the current arrangement is not sustainable. The rest of the family are there already but he won't listen to us.

Just to really top things off for me, DH has been away since Thursday (back late tonight) and then is off on Saturday to India for TWO WEEKS for work. I'm juggling kids, school holidays, elderly parents. It's all doing my head in. I'm now searching for more holiday clubs to book them into. It's all rubbish.

Apologies for the rant.

[twentyten]

Sending sympathy and for later. It's so hard. Look after yourself- you need to be ok. Do what you can and make it clear to sw what you can and can't do. Thinking of you.

[VegasIsBest]

Sorry to hear you are all having such a hard time with this.
As you are self funding anyway, could you investigate options for respite care for your mum? It sounds like the whole family needs a little space and support, particularly your poor dad.

[ajandjjmum]

What a tough time you're all going through. I can empathise (PIL) and know a number of people who are in a similar position - but that really doesn't help you much!

One couple I know have just been admitted to accommodation where they can offer the nursing care that she needs, whilst her DH can live with her and be looked after re. food, laundry etc. Have you had chance to look at these type of options (or do you need another 24 hours in the day?).

Sadly, we lost my DF some years ago, but it seems that when a couple are both around they feel stronger, and perhaps over-estimate how much responsibility they can take. I've seen that happen with several friends, and the only way one friend was able to get through to her DF was to bring in the old emotional blackmail (you're making me ill Dad, because I'm so worried about you both). Cruel to be kind maybe?

Wishing you strength.