Dad (with dementia) and I don't know what to do next?

[FozzyC]

Tonight had paramedics out to mom for second time this week, fell twice early this week and second time paramedics saw her, then again tonight. Now apparently she has a broken rib, complicated by almost zero mobility, incontinence (lay in bed last two days and just wet it), stress incontinence and overflow diarrhoea, and host of heart/arthritis/chest problems -cough would rattle your bones, she caught cold/flu that dad has currently. She is terribly depressed.

So it's dad who has dementia (not mom) and he is primary carer for mom, he has awful chest infection, had out of hours GP out to him Tuesday and paramedic assessed and treated him again tonight while seeing mom. He is at wits end, mom won't co operate, misses/hides pills, won't eat or have fortisips. They have daytime carer five days, night time for mom seven night.

Moms always been his rock, but now he has a recent dementia diagnosis, lost licence, needs support and she won't even take pills and eat and she drinks a bit too much (according to him) which he's had to cope with. If he has company, someone to talk to, he is lucid and sociable mostly and this valuable window of time for him is being lost/diminished by mom being as she is, ok ok, some of it she can't help but no one asks more than eat, drink, take pills?

Isn't it all so sad, no way to go. We try to promote change to care provision and housing, but it is often falling on deaf ears, we encourage dad to think about better housing (walk in shower, more activity etc) but mom talks him out of it after a day or two despite him being enthusiastic about extra care housing. Twelve months ago I would never have dreamed it would come to this, and how hard it is to deal with two people with differing needs (plus yours, your families, your employers!).

Dad was always the hard one to deal with but now I feel so sorry for him, he has fought diagnosis but now licence and his trusting GP has gone he needs mom more than ever and she's not there. She is frail, but of she could just take pills and eat, it would take such a weight off! Poor Dad, poor Mom.

 

[LYN T]

Hi FozzyC

You have a lot to deal with don't you. Do you think the carers could give your Mum her meds? I feel as though your Parents need to be assessed/reassessed by Social Services to have their needs met. Perhaps you could phone SS's on Monday. Emphasise that your Dad can't cope caring for your Mum-lay it on the line that they are both vulnerable. Don't be too polite it won't get you too far. Tell them a crisis is on the cards.


Take care

Lyn T X

 

[marionq]

Agree with Lynn. Put the problem back to SS. It is too big for you to cope with on your own. I would also suspect that as well as physical issues your Mum may have mental ones too - possibly depression or anxiety or it may be a bit of senile dementia creeping in there too. When she has so many things wrong with her this may be disguising the underlying one. You need help. Insist on it politely but firmly.

 

[FozzyC]

Thank you Lyn, and you're right, things have moved on in a bad way since SS assessed and put night care in. The daytime care was supposed to be mainly cleaning but is now primarily getting mom washed/dressed and laundry.

The carer was there hour and half yesterday and it took all her time with mom while my daughter chatted to Grandpa, put vacuum round and made coffee, I mopped floors and wiped work tops and sorted paperwork and hubby washed up and sorted the bins, then we made them some food. They'd not had daytime care since Xmas Eve so house was in a state (they'd actually wanted to cancel all care between Christmas and new year?)! We had our Christmas dinner there on Xmas day, it worked pretty well, cooked turkey and pork at home and then loaded it all with veg and trimmings in car and took it over to cook and share with them. Loaded all the crocks in a box and took them home after. They really enjoyed it, which is surprising given mom was nursing an undiagnosed fractured rib and dad was streaming with cold and had a chest infection.

Discovered steroid tablets yesterday out of hours GP had given dad Tuesday but he had not taken as he hadn't realised he had to (forgotten), mom obviously hadn't remembered but then she had a fall and paramedics to contend with. He had remembered antibiotics. Mom and dad insisted to Carer who called paramedics to mom same evening that I shouldn't be called at the time so I didn't know either! Note to self to follow up the paperwork, found that folded under a coffee cup yesterday saying what meds had been given!

We took my friends daughter to panto Boxing Day as mom and dad couldn't go, my friend called to see mom and dad while we were out and she ended up stripping the bed and doing laundry . Bless her, I wouldn't have put her in that situation knowingly.

We looked at extra care apartments before Xmas, dad said he loved it and would move tomorrow, but mom had her face set the whole visit and she's talked him out of the idea. Dad needs people, mom is so depressed and he has that all day unless I'm taking him out which I do twice a week when I can round work. I am sure he would thrive if he could walk down to the restaurant and have lunch, join in activities and watch tv with company or play cards. If mom gave it a chance I think with an electric wheelchair she could join in too and try to lift herself out of her desolate mood. While they remain where they are neither can be happy and so much time and money goes into maintaining an over large and unsuitable house and garden when it should be going to them!

I'd thought to call SS yesterday but it's too complicated to explain from scratch to a Duty SW, I will call their SW Monday as suggested, try not to be too polite and see if we can move things forward. I spoke to care company about meds and they say mom needs to agree that giving rather than prompting meds is put in care plan, so I will take that up with mom. I think GP needs to review anti depressants, IF we can get mom to take them! I think her self neglect is a form of passive protest against her situation, and even a form of self harm, my friend suggests mental health assessment? Oh dear, I will just keep going to my counsellor, dosing up on meds for the heavy cold and cough I've had for a week and trying to give my children who are home for Christmas a decent time, feels like I'm juggling all the time and dropping the ball too often!

 

[FozzyC]

Thanks marionq, our posts crossed I think but it seems we are thinking on same lines re mental health? They asked mom about a dozen questions at an elderly care appt in October and she did pretty well, but there seems to be a decline in terms of confusion in recent weeks and from what I read just those questions hardly constitutes a proper assessment? Not sure if confusion is due to depression, dementia or dehydration (she is restricting drinking as she's worried about continence but then she won't use the better pads I've bought, seems to think panty liners are enough!). She is often wet and doesn't even realise, she was shivering in a wet bed when my friend found her Boxing Day afternoon, with no realisation.

 

[CollegeGirl]

I'm so sad for you, having all these problems to deal with. It's sounds almost intolerably tough on you all. I don't really have any advice, but one thing that did cross my mind, although it sounds harsh even to me - would your dad consider going into a home/sheltered housing by himself? Is this possible? Would he even consider it? It's all I can think of, and I'm sorry if it sounds awful.

 

[Onlyme]

It sounds as if she realises your is the only thing standing between her and a nursing home. It's not fair on either of them, or you. Such a nightmare.

 

[FozzyC]

Thank you for your empathy. I said to dad today that it is only he and I working hard that keeps mom out of a nursing home so she needs to work with us, not against us.

Paramedic and my hubby told her again last night to eat, drink, take her pills - it's not asking so much is it? I asked GP to prescribe Fortisip, first delivery last Monday, she's refused to even try any of the flavours, says it will spoil her meals but then doesn't eat what is offered. Relief that she ate some Christmas dinner but she ignores veg and just eats the meat and the pork crackling, no wonder she gets bunged up on diet of protein, bread and whisky?

I want to give her a stern talking to, but I fear making her more depressed.

Dad moving out would put Mom firmly into Care Home territory, he wouldn't do it, but it's certainly crossed my mind that if I can't help them together it would be the only way to make one of them happy.

Will chat over with SW tomorrow, hope for some intervention/inspiration! Dad said he would pay for respite, even though it would cost £2.50 a week, think I said £1500 when we discussed, think £2.50 would be a steal!

 

[FozzyC]

Update

Social Worker proposed two weeks respite, that would give Dad a break and Mom time in a home where she would be offered three meals a day, regular meds, physiotherapy (Physio has confirmed she will go into the home) and perhaps chance to trim back the alcohol intake which has ramped up for both of them. They could also assess continence issues. A full community care assessment has been started for Mom, I've been given a Carers Assessment form to fill out for me, and they will do an assessment for Dad (remember he's the one with dementia).

I've had GP out to both of them x3 for chest infections, steroids and antibiotics for Dad now since 23 December. He arranged urine tests for both. As Mom has regular UTIs and fails to take low dose antibiotics an infection is pretty likely. She refused to do sample for over a week, then when I rang for result it turns out it was kidney function test, not for infection so another sample has now gone in. She's seemed confused and rambling, so I thought UTI might be cause.

GP did GPCOG on Mom and after speaking to me he has referred her to Memory Service. I did say I think she is more depressed than anything else, and I also feel alcohol is a big factor. They drank a whole bottle of whisky Sunday night, each blaming the other. They got my friend to get a huge pile of spirits for them the weekend before which disappeared at an alarming rate.

There is a new a Extra Care housing scheme opening this Spring near me, and very close to where I work. Hubby and I went to look at show apartments last Friday, Mom and Dad weren't feeling up to it. We went back and told them all about it over fish and chips and Dad was very positive and Mom agreed it was a good option. It has a GP Surgery, Pharmacy, Community Hub with cafe and community activities, all linked to the residential area with its own lounges, guest room, laundry etc. they plan lots going on and my sociable Dad would always have someone a short stroll away to talk to. Mom who has a lot of mobility problems could use the scooter they have to access the whole building and if she loses ability to walk altogether all doors in the apartment and outside will take an electric wheelchair. Currently their home has no walk in shower, narrow doorways, two floors linked with stair lift, badly worn carpets, over large, 100ft garden they can't manage, kitchen falling apart. Dad cannot walk far enough to get to anything like a shop or community building, there's a petrol station in scooter range but little else and I worry about him going too far in case he gets lost. Mom goes nowhere, she says she's a prisoner, we have to negotiate a precarious ramp to get her out. So...

We can see a lot of positives, respite to get her fitter and more mobile (not respite for me who will have to visit Mom and keep eye on Dad who forgets to shut front door and turn gas off etc). Then Extra Care housing which SW would refer them into so they would get an apartment, it's oversubscribed. I really believe the company and activity there would slow Dad's dementia and give Mom some life back.

So much more positive this weekend, until Monday. I'm told they are saying no to respite or moving. I lost it, said I couldn't keep trying to run their lives and home and my own, that I thought I had a chance to get my life back, that I thought this was the best way to keep them safe and give them some quality of life back. I told them I was being made ill and would have to walk away. That their situation was distressing my children, my son came home from Uni and I ended up taking him to GP because he broke down, now on antidepressants at 21 years of age with sick note for a month. Seeing what was going on here on top of his looming exams and project work pushed him over the edge. He couldn't bear to see them to say goodbye when he went back. He's had a Christmas break with us dealing with two falls, two paramedic call outs, out of hours and regular GPs, continence problems, Nan and Grandoa ill and Mom stressed. His Nan couldn't even bother to write his Christmas card, nor mine. Dad found the cards Saturday after Christmas and tried to write them in his block capitals, bless him he obviously felt bad Mom hadn't done them. He's the one with dementia but he has more empathy and insight than Mom!

Friday I asked Mom what she wanted for Sunday lunch, she said she would love roast beef. I was visiting a friend Sunday but I cooked a beef dinner with all the trimmings which we delivered on our way out with instructions of how to heat when they wanted their meal. Monday, moms is still in fridge, she told carer she was too full to eat it. With what? I gave her a piece of beef the size of a child's palm to try as it was freshly cooked, and it turns out that is all she ate all day! I can't understand, did she really not feel hungry or was this a way to hurt me, ask for a meal and leave it?

Anyway, my hubby is going to meeting with them and Social Worker, I am staying away though SW is going to call me later. She was very good, I left her a distraught message Monday night and she listened yesterday and agreed I should back off. I couldn't go into work yesterday morning I was in such a mess. I really thought they would be sectioning me a Monday afternoon.

 

[irishmanc]

I am truly sorry for your difficult situation. My Dad has dementia and Mum has a range of health issues which limit her mobility. Caring for 2 parents is enormously stressful and you need to be mindful of your own health in all of this. I neglected mine and suffered as a result.
Eventually both parents ended up in hospital and from there to a nursing home just before Christmas. Now they are both being looked after, I can see that they quite simply ran out of options as regards staying in their own home. Neither was managing, yet neither was willing to give up, until fate intervened.
I was devastated to see them having to go into nursing home care but they are being so well looked after, that I am beginning to see the benefits.

 

[FozzyC]

Thank you for your empathy Irishmanc, isn't it awful that things have to reach a crisis. I hope I don't do this to my children, try to stay one step of the game. Your situation sounds very similar to mine, I am trying to get them to see this is the best way to have some independence and stay together and stave off the almost inevitable nursing home as long as possible. Being selfish, I wish I could have the peace of mind of knowing they are cared for 24/7 instead of being so vulnerable, but that day will come, it's just the transition that's so painful.

Waiting for hubby to come back from meeting but my lovely supportive friend went in my place and gave me a quick call to say they are leaving door open to looking at extra care apartment, but respite is being replaced by an evening call to see they have a hot meal. Well that might suffice for a while but my fear is that they will pass the point of the extra care housing and one or other will end up in a nursing home and the other left behind with a house that is unsuitable and no community support (which they would have in the apartment complex).

 

[Gigglemore]

So sorry you are having such a bad time, to know that your son is being so affected by his grandparents' problems must be dreadful for you.

I do hope that at the very least they will go on the list for the extra care housing. You really do need to have some "light at the end of the tunnel" to help you to keep going.

Great that you have such a lovely friend and a supportive husband to lean on. Hope things look a bit brighter soon.

Take care.

 

[FozzyC]

Thank you Gigglemore,

We have always been so close, I'm an only one, I met my husband when I was 15, his mom died shortly after we married and he is regarded as a son by mom and dad. Because dad had a major heart attack at 56 they closed their business and so were able to spend a lot of time with their grandchildren. We holidayed together at least once and often several times a year until mom became too frail a few years ago. We have shared our celebrations and our problems, which makes this whole situation so hard to deal with. Our son is a very kind lad, loves his grandparents and helps them whenever he is home. He couldn't believe the deterioration since last Spring.

Tonight mom and dad have told hubby they accept they need to move, but I'm trying not to put too much store by this. I've heard it before. Moms sister called her and was very supportive of the idea that they should consider extra care housing, citing her friend who has moved to a similar place. We will see?

Thank you so much for your replies, this really is a very supportive and helpful place to vent. I thought my head would explode Monday. I just need my dad to have the chance to make the most of this window of opportunity, before his dementia worsens, and I don't want to be battling my mom in the process. He needs company, she needs safety, I need peace of mind.

 

[jugglingmum]

My mum is in extra care and it definitely has worked as a stepping stone to keeping her out of a care home, I am very pleased with it.

One big positive I have found is the care team are on site so consistently all the same carers, and a manager on site so I can pop in to see her with care issues when I am there, and everyone in the complex keeps a general eye out for her. She uses the restaurant in the building as not up to cooking, but carers will prepare food for her when she gets to that point that she can't.

The one my mum is in doesn't not provide any night time care (10pm to 6am) so that may be an issue for you.

Whilst my mum used to live 200 miles away she came up for the kids birthdays, half term, covered child minders holidays etc, and I do miss that side of her massively. My kids miss grandma too, but happily spend time playing snakes and ladders and basic card games with her because they remember how she read to them etc when they were little.

 

[pumpkin91]

I feel so sorry for you. We are in a similar position with my parents - Dad has Dementia and has rapidly got worse, Mum has her own health problems and just can't cope. They both seem to think that I can take over and do everything for them but I have a Husband who is disabled, a son with educational special needs and another son who lives with us along with his 4 year old daughter. I want to help them but there is only so much I can do. We are at out wits end trying to cope with them so I really do know how you feel. Care seems such a hard move to make but the current situation leaves them in a very vunerable place. Really take a tough stand with Social Services though as if they can pass the buck they sure will!! Hope things settle down and your parents begin to manage better soon

 

[FozzyC]

Thank you for your support. Pumpkin91, you do have your hands full and it sounds like you need some more help, you don't want your health to suffer as so many rely on you, and anyway we need to try to look after ourselves for our own sakes (says she who is scared to check her blood pressure!).

It seems so hard to meet both my parents needs and have any sort of life. I have felt I
have had to 'hover' over their lives and as a result even when I am not there I am making calls, sorting paperwork, reading up or generally just mithering about their situation. As such I seem to have little room in my thoughts for brighter things - if that makes sense? Staying away this week has been hard and I need to 'break the ice' and go round. Hubby has been over and my friend, they have their carer visits twice daily also so they haven't been abandoned. It's added stress to my hubby's life because he's so busy at work but he is trying to move things forward for me.

I asked if they needed shopping but dad had a solution, the delivery driver from the Co-op came out, picked up dad's list, did his shopping and dropped it round and collected the money, how's that for service! I guess it demonstrates that they can find solutions and that I need to let go more.

Glad to hear that extra care housing has helped your mum Jugglingmum, it seems to make sense to me, it may not last forever as things progress, but I think at nearly 82 and 80 they need to be making the best of now, while we can make a plan for the future. I understand that you can have agency Carers come in, so that should cover night time if their own staff do not. They haven't given us any written details of what the care can be, or what it costs. It's still a building site so I'm sure there will be more details to come as they start allowing people to sign the tenancy agreements.

At present it's more the reassurance someone is there 24/7 in case of emergency, which this place does have. Mom has a friend who calls on a Friday to do some cleaning and the weeks ironing, and a mobile hairdresser, both could continue to go. I will check but I am sure they can choose to have their current agency provide care, there would be advantages to using the on site Carers though, but for now we need them to see that the help they have now can move across without it all being a big upheaval. Probably as staff change we might want to change to the on site Carers rather than have a new carer from the Agency we use currently. I'm hoping mom and dad will need less care if they can start to get their lives back on track. A lot of the care is simply because mom has given up and will not eat and misses medication, if she was more motivated and less depressed I see no reason why she wouldn't take her pills and eat. Dad despite his forgetfulness is actually pretty good at taking pills, though antibiotics four times daily can be a challenge! He will get himself something to eat but will forget mom if she's upstairs.

I'm just hoping I don't have my hopes dashed again. I know it seems unkind to want them to leave their home of over 40 years (mine too for ten of those), but it really is unsuitable and too large, the basics like a ramp and handrails, raised toilet seats and frames are all there, but the bathroom really needs converting, the hall carpet is worn through and soon will be a trip hazard, the stairs despite a stairlift are still a problem as mom has to pass the head of the stairs to get to the bathroom and I worry that with her frequent falls she might go top to bottom unless dad remembers to send the lift back up each time he goes down. They have a big hall and a gallery landing, all of which are hurdles mom has to cross to get to a loo. Dad wants the dining room made into a bedroom but the downstairs loo is so narrow mom struggles to get in and I worry if she falls behind the door we won't be able to get into her. She couldn't wash properly in there either. I think we would basically have to spend a huge amount of time and a lot of money to keep them there another year or two.

A big article on the front of the local paper saying how these extra care apartments are oversubscribed and what facilities there will be has helped persuade my parents a little, as has the support from the SW, my aunt and my family and friends. They can view an apartment nect week so I have my fingers crossed.

 

[Time trader]

Tonight had paramedics out to mom for second time this week, fell twice early this week and second time paramedics saw her, then again tonight. Now apparently she has a broken rib, complicated by almost zero mobility, incontinence (lay in bed last two days and just wet it), stress incontinence and overflow diarrhoea, and host of heart/arthritis/chest problems -cough would rattle your bones, she caught cold/flu that dad has currently. She is terribly depressed.

So it's dad who has dementia (not mom) and he is primary carer for mom, he has awful chest infection, had out of hours GP out to him Tuesday and paramedic assessed and treated him again tonight while seeing mom. He is at wits end, mom won't co operate, misses/hides pills, won't eat or have fortisips. They have daytime carer five days, night time for mom seven night.

Moms always been his rock, but now he has a recent dementia diagnosis, lost licence, needs support and she won't even take pills and eat and she drinks a bit too much (according to him) which he's had to cope with. If he has company, someone to talk to, he is lucid and sociable mostly and this valuable window of time for him is being lost/diminished by mom being as she is, ok ok, some of it she can't help but no one asks more than eat, drink, take pills?

Isn't it all so sad, no way to go. We try to promote change to care provision and housing, but it is often falling on deaf ears, we encourage dad to think about better housing (walk in shower, more activity etc) but mom talks him out of it after a day or two despite him being enthusiastic about extra care housing. Twelve months ago I would never have dreamed it would come to this, and how hard it is to deal with two people with differing needs (plus yours, your families, your employers!).

Dad was always the hard one to deal with but now I feel so sorry for him, he has fought diagnosis but now licence and his trusting GP has gone he needs mom more than ever and she's not there. She is frail, but of she could just take pills and eat, it would take such a weight off! Poor Dad, poor Mom.

I completely understand your comment that 12 months previously you wouldn't have thought things could get to this stage. I also understand the issue where your Dad accepts changes would be beneficial, only to has the suggestions dashed after he's discussed these with your Mum. The elderly get so set in their ways and don't always welcome changes as they often see them as a threat and not an ideal solution to help and make for a better quality of life.

Did the Paramedics make any comment about a Safeguarding Referral? This is something they are trained to follow up in a host of different circumstance and it certainly does not mean that you or anyone else in the family have been negligent. What it does do is alert the right people in the right department - Social Workers, GP, Community Matron etc and get the ball rolling to give you and your parents the support you clearly need.

Our Dad keeps saying that everyone thinks he's loopy; none of us have ever referred to Dementia as that; he shuns changes even for the better, accuses us and his care team of taking things that never existed in the first place. Dementia is an awful illness which impacts on all those around the individual. We try to do our best against all odds, Dad has started to show signs of physical aggression, so much so that I will no longer be in his company on my own, never thought I would be frighted of an elderly man.

 

[FozzyC]

Thank you Time Trader, you are quite right about the resistance to change, and I do understand Mom up to a point, I can sit here in my home and imagine how hard it would be to be made to leave by necessity. I'm just trying to keep them safe and together as long as I can and I sincerely believe it will give dad a new lease of life and mom a shot at discovering that life is not as hopeless and futile as she seems to think.

We called by the new development yesterday just to look from the outside but a Visitor who turned out to be the MD of the developers said the Security Guard could give us a tour. Sadly we didn't have moms wheelchair in the car as we didn't expect to be getting out of the car, but dad was treated to the deluxe tour of what is still a building site, but in the final fit stages. He was hugely impressed and so was I. I am arranging for mom to see the show apartment Tuesday but we will not be able to access the rest of the building as the workers will be on site and it wouldn't be safe.

Paramedics didn't mention Safeguarding but I have clearly told the Social Worker they are both vulnerable adults. They are putting in place a call to provide a hot meal, in addition to the bedtime call. Mom and dad pay separately for a call to get mom dressed, do lunch and medication (need to discuss this being covered by Social services to some extent). We are tightening up the care plan for the daytime visit as events have moved on swiftly from someone coming to tidy up a bit! I'm afraid I am probably a thorn in the side of the GP but I don't care to be honest, if it helps! Moms been referred to several clinics, orthotics, incontinence, Physio, elderly care, neurology etc. I suspect however that just eating a decent diet, taking her tablets, having a more positive outlook and some gentle exercise to build her up might deal with most problems, oh and cutting down on the whisky!

Dad tells every one he's thick, daft, demented, tapping the side of his head with his finger as he does it. But if he said nothing most wouldn't know, not at a short meeting, they would think mom was the one with dementia. Oh she's been referred to the memory clinic now too by the GP! I am pretty certain it's depression, dehydration, poor diet and alcohol that are the main culprits?

I've got to believe that things will get better, even if it's temporary.