My mum is no longer coping looking after my dad

[Cherryblossom200]

Hello,

My mum is mid 70's and dad mid 80's. My dad has end stage dementia and Alzheimer's. He can walk but very wobbly and can't be left alone.

They have a carer come in during the morning to get dad up/showered etc. But that's it, my mums health is steadily declining and I can tell she's struggling looking after my dad both emotionally and physically.

They are both ill at the moment with chest infections and seem to consistently get ill every few months. Then my sister or myself end up running around getting shopping/sit with dad so my mum can go in doctor appointments etc.

The problem is. I'm a solo parent to a young child. I normally work full time, but was made redundant a few months ago. So I can help out a bit more than normal. But I start a new job again in January, and all my time has to go into proving myself and looking after my child. I am careful with my boundaries because when I'm working I literally have little to no time for myself let alone family.

My mum is very anxious and doesn't like the idea of my dad going into a home. I try and talk to her about it because the situation is now at boiling point. She can't cope. Last night my dad fell out of bed twice, she's ill and not getting any rest. I refuse to take my DD over to their house to look after them as we will just get ill which I want to avoid.

I want to sit down as a family early next year to have difficult conversations which my mum seems to avoid. Yet we end up every few months in these moments where my mum can't cope and then we end up in this circle of madness where everyone is running around trying to help them. It's not working anymore.

I have learnt that the only way to make my mum listen is by pulling back. I put my needs first as I have to look after my daughter.

I'm not sure what the solution is, but this isn't working having my dad at home when he is declining so badly.

You're right to hold.your boundaries.

They need:

• care assessment for.yoir dad
• carer's assessment for your mum.

Is the current carer self funded.or LA funded? Could they have more visits as an interim measure while waiting for the care assessment, or are there any suitable day clubs nearby?

They have had an assessment recently but only still getting on visit.

It's paid for by the government currently.

My mum is a total mess. I'm certain she has ADhD and doesn't cope well with stress so this just makes it even worse.

Today I broached the subject about having a family meeting in the new year and she almost put the phone down on me.

She's impossible to talk to and it's frustrating. I think she is afraid of being on her own so would rather take the strain.

My inlaws were in this situation, though they were somewhat older - in their 90s. FIL had had vascular dementia since his early 80s. They had carers coming in 4 times a day eventually (which they paid for), mainly because of my FIL's double incontinence. It was wearing my MIL out, she would have been happy for him to go into a home but he didn't want to go.
He died rather suddenly after a short period in hospital. MIL really perked up - she was sad but very relieved. She survived nearly a other 10 years, dying at 101.
So try to convince your mother that it's best for both of them if he is in a home. It's no use to him if she becomes too ill to cope, or at the worse kills herself trying. Maybe he's past understanding where he is or who people are? So stubbornly keeping him at home is actually a form of selfishness on her part to assuage her guilt rather than doing the best thing for both of them. Perhaps take her to visit a few homes if she's not been to any before?

It is better for him to be cared for by trained professionals.

He will have a better quality of life and so will she.

She needs to accept this asap. Fur all your sakes.

I've just been to take their dog for a walk and my poor mum looks awful. She is barely functioning.

Every time this happens (which is more frequent month by month) I warn her to start planning for the future and she ignores me. The problem is I feel guilty for not doing more! But realistically I can't and don't want to either. It's selfish but I would have to give up work and our home if I became a carer for them.

Its often guilt OP - they know full well that they can't really cope but will no doubt feel guilty if they need to put a spouse into care but in their hearts know that they themselves can't cope- it's heart over head and they also worry that people will judge them - a lot of older relatives and friends 'do' judge too -

What about some respite care in a home? Maybe approach it from that angle, this speaking to the council he may be eligible for a week or so of respite, which would give your mum a bit of a break, and then maybe she could see the positives of him being in a home?

LA funding makes it more complicated, but I'd try to get another assessment for both of them to see if care visits can be increased. Tell the LA there's a risk of carer breakdown.

Does he generally fall out of bed and need attention at night and did your DM make that clear at the appointment?

Unfortunately Carers often hide a lot of what's going on and that can include to relatives and HCPs.

It just seems odd that your DF needs 24 hours care and they're only getting a carer once a day. Usually 24 hour care is the trigger for a Care Home admission.

Could you speak to your DF's SW?

End stage dementia does usually mean residential care. Do not think about giving up work yourself. I'm live-in carer for my remaining parent. When they get to end stage, I know I won't be able to do it on my own, so residential care is probably going to be needed.

Your mother needs a Carer's Assessment and it sounds as if your father should be on more than one carer visit a day. Are you able to attend the SS meetings to make sure that your mother isn't minimising his needs. You can also contact Admiral Nurses if you haven't done so already for support and advice. https://www.dementiauk.org/information-and-support/how-we-can-support-you/what-is-an-admiral-nurse/

Keep yourself fit, healthy and mentally strong, this is the best way to support your parents. You can only do what they are willing to let you, unless you have PoA (even then, concensus is better). It's a hard road to travel. 💐

Was anyone other than your parents at the assessment? My mum (who has alzheimers) was recently assessed without any of us there ( we didn't know it was happening despite frequent conversations with social services). Mum told the new (yet again) SW that she manages her own finances ( she doesn't even pay her paper bill, DB sorts everything financial), goes to assorted activities that she doesn't, that she has no hearing issues (needs aids), does all her own cleaning etc. And the SW took ot all at face value even though these things have been pointed out before. Could your mum have told the SW she's managing fine out of pride/guilt/wanting to make a good impression?

End stage dementia care at home is absolutely gruelling. Been there.

There needs to be a face to face sit down conversation with your Mum, both you and your sister.

If she is avoiding facing this, which is very common, then unfortunately you're going to need to just go and do it. Giving her advance notice and trying to make arrangements to speak with her, will just mean she delays again.

Thanks everyone, we got through Christmas. My mum is on the mend, but my dad is still no well. It always takes about a month or so for him to get rid of infections.

We spent Christmas Day with my family and my parents, just got through it. Then myself and my DD went to my parents Boxing Day late afternoon and made food and watched tv. I needed the next day off, and then yesterday we took my mum to a pantomime and lunch whilst my sister and her family looked after my dad.

Today my mum called me and asked if I would make dinner for them and I said we were staying home today. My DD has ADhD and sometimes just need time at home playing. I feel I'm constantly having to justify myself to my mum, and then feel guilty.

My mum could barely walk to the theatre yesterday, things are beyond ridiculous now. She is constantly changing my dad's bedding at night as he wets the bed.

I start work full time next week, for a month I'm in the office full time and my DD will be in after school club 5 days a week. After a month it changes to 2 days in the office, but I just feel so bad for my little girl as it's going to be gruelling for her. I'm trying to let her and myself rest/but also have fun before work/school starts again.

I explained that tomorrow I have friends over in the evening and I got the feeling she felt let down that we won't go over.

I'm in a perpetual state of justifying/guilt with my mum.

And by the way. Today I'm cleaning all day and not putting my feet up!

This doesn't feel right or normal. I am making a stand by protecting my boundaries otherwise I will be a mess myself. I've tried broaching the subject about care/planning for the future and my mum avoids it and so does my sister. I think both of them are a bit crazy if I'm going to be honest and a part of me just feels like leaving them to it.

My extended family has been through this. None of our attempts to head-off the entirely foreseeable crisis were welcomed or engaged with and we had to step back a bit to force some realism. I had to answer requests for help with a patient but resolute "I wish I could help but it's not possible" or an "oh no, that sounds terrible, what are you going to do?".
After the third ambulance in 48 hours because aunt had fallen and could not get up and uncle couldn't lift her, they become more amenable to considering different options. It was necessary for us to be clear with social services that we could and would do no more.
Your dd is going to need as much downtime at home as possible over the coming month. Whatever the solution is, it cannot be you. Your plate is full. Good luck

Thanks, it helps to hear what other people have been through.

I feel like I'm being horrible by not doing more, but when I lost my job three months ago I nearly had a nervous breakdown through stress. I'm not exaggerating, I was genuinely worried that I could no longer cope. Part of the trigger was that yet again both my parents were ill and I was running around trying to get medicine and walking the dog. I literally couldn't cope and my mind shut down. So now I'm protecting myself, selfish but I have no choice.

I am really glad you are stepping back. You have to put yourself and your DD first.

Remind your DM that you are starting a full time job next week and any spare time will be taken up looking after DD and your house and meals.

Unfortunately it often takes a crisis before people accept the inevitable.

Thanks. We have a crisis it seems at the moment almost everyday.

I think the thing I struggle with the most is the justification of my time all the time. I feel I have to explain all the time why I can't do something.

The other day I took my DD out with a friend and her children. My DD hadn't played with any kids since breaking up for Christmas, afterwards I needed to go food shopping. My mum called when I was in the park and she asked if I was free to take her dog for a walk.

I said no as I was in the play area where dogs aren't allowed and was met with a steely reply. Which almost ruined my day, because yet again I felt guilty for not helping and putting their needs first above my DD's.

This is what I'm coming up against all the time and I hate it.

I work full time normally with 25 days holiday which is used to look after my DD. I get zero time to myself, so I'm trying to enjoy my time off before I'm busy again.

Will they be self financing for a carehome? If so perhaps they could go together. I know a couple of couples who did this. Or 'extra care provision'. I agree that your dad going somewhere for a weeks respite care would help everyone see things more clearly.

I don't know if the Cinnamon Trust has been suggested yet? They should help to walk their DDog.

And doesn't your DM have s supply of ready meals? I can't imagine she has the energy or inclination to cook.

And if your DF is wetting the bed at night, several times, is the incontinence service involved?

I've just googled our Council and incontinence Service and it's come up with a team of specialist nurses and they accept referrals, so no need to go through the GP.

I think though that given everything you have to deal with you shouldn't be feeling guilty. Easier said than done though

Defo do something. Sometimes the elderly just can't cope with making decisions. Get a carers assessment or whatever it's called sorted for them. Get your dad into respite care to give your mum a break for a while. They will sort him out with a continence solution too.

Thanks everyone, I'll recommend the respite care to my sister. My mum won't listen to me.

In terms of food. My mums very fussy and only really likes home cooked food the majority of the time, she worries that my dad won't get any nutrients through microwave food.

Have been through similar - has your mum applied for attendance allowance? Instead of doing her shopping can you get online deliveries to her home - take a look at Wiltshire Farm foods; ready meals to stick in the microwave. My parents GP has a liaison person who was really useful to signpost help. Age UK’s helpline were great with practical advice.

Although we can often help family during a crisis, with the elderly it can go on for a long time. It’s not sustainable and I remember my mind shutting down too - that’s when you have to drop the rope.

It's very hard to convince family that a care home might be in someone's best interests especially when that person doesn't want to go. It's sad but the only way to make your DM understand is not to be there to pick up the pieces.

My mum gets quite a few different allowances, not sure what they are for. But they get them. I've said several times for her to use it on additional care, no idea what she is doing with it.

My sister is slightly more involved that me as they live opposite my parents. I live a 5 minute drive away, which is handy but at the same time means the expectation is I drop everything, pack my DD in the car and help out which I can't do.

My job is demanding, it pays well in order for me to be able to pay for my mortgage which means I'm mentally exhausted normally. For solo parents like myself it's almost impossible for us to be able to help elderly parents out.

I think you need to speak to your Dsis rather than your DM. Explain that with your new job, you're simply not going to be able to do anything during the week. If you can offer something like a weekly weekend visit, I would say that you will do that. But she must understand that as a single parent of a DC with ADHD, you don't have much to give.

Maybe you could set the wheels in motion for cinnamon trust to walk their dog. That should hopefully be a bit less contentious than the rest.