advice about step-dad

[Imogenlily]

Hi

I'm looking for some advice about my stepdad who's been diagnosed with Alzheimer's. My mum passed away at end of May and she had Alzheimer's/Lewy Body (this is whaat they finally decided). I was her live-in carer until October when she was sectioned then had to go into nursing home in Jan. I've been living with my step-dad by myself and am slowly becoming his carer too and I (I know I'm selfish) don't want to be.

The house was my mum's and I was her live-in carer (I've always lived with her as she's had bad health for decades). He also had severe mobility issues - he can't walk at all without a walker and keeps having falls - his legs just crumple and he has no strength in his arms or legs to either get up or be helped up and he's too big for me to get up even with help. My stepdad can't manage in the house by himself. He gets confussed with his phone/phone calls (he gets angry/confussed). He can’t cope with any letters/admin and has no filing system. He soesn't notice if food has gone off. He refuses to have the cleaner in his rooms (he has a downstairs bedroom/lounge, bathroom and kitchen that he doesn't use). He can’t remember names - his children are ‘boy and girl in the family’. I’m ‘that person who lives here’. He’s completely apathetic. He doesn’t notice dangers like when our garage started leaking or the fusebox went. He refuses to socialise, doesn’t want to be be bothered by anyone (me included) btu gets snappy if he needs help.

He was utterly emotionless about my mum’s death – he refuses to visit or even talk about her when she was alive. Showed no emotion after she died and had to be cajoled into going to her funeral. He’s not overly close to his own children – he’s never once rang his grandkids to talk and barely sees them. I think neither want to look after him either so they leave it to me. His children have LPAs - after I kept telling them how important it was. His daughter does came to see him roughly once every fortnight or sometimes once a week if there are issues. His son lives some distance away and rarely if ever comes up but they speak on the phone.

I'm struggling with my stepdad. We're not close - he's quite a selfish, self-absorbed person and he and mum didn’t have a happy marriage, so I don’t really want to help when he abandoned my mum. But I feel a duty to him but I'm resentful about it. I don't want to be his carer but while I live here I see no other option - I can't ignore him. He's not easy to care for. He takes stupid risks - refusing to use his walker with a tray, using kitchen knives when his hands tremble etc, moving away from his walker to get something when he has no balance and can barely move with out etc. He's also moody, anti-social and a mood hoover - just being around him is mentally exhausting.

Another problem is I am looking for a new home, partly due to inheritance tax (it's complicated) I have CFS and ADHD and the house is just too much and too expensive. It’s my childhood home so it’s not easy but I don’t want to stay and I’ll become his carer for god knows how long (he’s the kind of person who’ll live until his 90s because he’s selfish) Which means my stepdad needs to find new accommodation. He has right of residence until November but if the house is being sold he can stay until then.

The problem is I'm struggling to cope with him now. His daughter I think is in some denial and wants him to maintain 'his independence'. I have a feeling this also translates to 'her independence' too. A lot of things fall to me to handle because I live with him and she can't get time off work etc. She thinks (or convinces herself) he’s OK because she doesn’t see him on a day to day basis and everything he can’t do – the same happened with my mum with my siblings.

Also because he's technically been diagnosed with ‘early stage’ alzheimers he can’t get carers because he can do the absolute basics. He will never accept any help and has been rude about nurses, refused/got rid of equipment and has completely isolated himself refusing to go out or have people round and just creates a very miserable, unwelcoming atmosphere (he's always done this). My friends, neighbours and brother feel awkward about coming in the house so I’m somewhat isolated too. He's also been rude about me and my family when he thinks we can't hear. I don't know how to deal with him in this period of time. I feel I can't kick him out - he's 84. But I also feel I'm slowly sliding into a carer role again and I can't do it again. I loved mum but it was horrible and exhausting experience – especially her sectioning. I can’t cope with going through this again with my stepdad.

I've told my stepsister and stepdad about having to sell the house - I think it was assumed I'd stay here and 'keep an eye' on my stepdad aka slowing become his live-in carer. I feel selfish not wanting to go through this again. I don't know what to do with my stepdad in this transition period. I can't put the house on the market until at least November. We're still waiting for probate from my mum's will. I spend most of my time just in my bedroom because I just don't want to be around him. My brother, neighbors and friends have told me I can't become his carer, but when I live with him, what else am I supposed to do? I'm stuck and I don't know how long for.

I’ve gone to the Citizen’s Advice Bureau but because my step-sister has LPA there isn’t much I can do when dealing with organizations/councils etc. I’ve tried to help but I’m not sure she’s being very pro-active – but this could also be admin red tape etc.

Any advice about how to cope with him or what else I can do? (so sorry this is so long I felt it needed context)

 

[Violet Jane]

Tell Social Services that you are selling the house and that your stepdad will be homeless from when you decide to put it on the market (it might make it more difficult to sell it if he's living there). I am assuming that the house was left to you or to you and your brother and that your stepdad wasn't left any share or interest in it.

Be clear with your stepsister that your stepdad needs care, that you're not going to continue being his carer and that they need to find him somewhere else to live now. It is the stepsister's responsibility as next of kin and attorney to deal with your stepdad's living arrangements.

It's quite understandable that you don't want to be a carer again, especially for someone so unpleasant.

 

[SeaSwallow]

I am sorry to read about the difficulties that you are having @Imogenlily. First of all you are not selfish, there really is no reason why you have to become a carer for your father-in-law. I do think that his children are out of line to expect you to take on that role especially as they do very little in that regard.
I think that you need to make it quite clear to his children that you are not prepared to be his carer and that they as LPOA have to make arrangements for that care. Failing that you could contact social services and explain the position, that you have your own health problems and that you are not willing or able to care for your stepfather. No matter what anyone says - you are not responsible for him.

 

[Imogenlily]

Tell Social Services that you are selling the house and that your stepdad will be homeless from when you decide to put it on the market (it might make it more difficult to sell it if he's living there). I am assuming that the house was left to you or to you and your brother and that your stepdad wasn't left any share or interest in it.

Be clear with your stepsister that your stepdad needs care, that you're not going to continue being his carer and that they need to find him somewhere else to live now. It is the stepsister's responsibility as next of kin and attorney to deal with your stepdad's living arrangements.

It's quite understandable that you don't want to be a carer again, especially for someone so unpleasant.

Thanks for your reply. Apprantly my step-sister got in touch with adult social services and was told there's nothing to do be done because he's not homeless *yet* - apprantly he needs to actually be homeless until they do anything (!). I generally get on with my step-sister but I also get the impression she doesn't want to be pro-active about it either.
Under my mum's will my step-dad has right of residence until November or until the house is sold - which means he can stay until however long it takes and I think there's nothing I can do about that. Also because I live with him, when he has a fall etc I have to deal with it - I can't just leave him and he'll come to me with the phone or letters he doesn't understand and basically wants me to deal with everything - I don't see how I can get out of it. His daughter works in the NHS and basically says she can't take time off work - she has one day off during the week (she sometimes works weekends). She'd never say I have to stay and look after her dad, but it's just the vibe I get. He used to put on a front of being all jolly and nice and then be a total ****-abble at home in private. I think she struggles with him too and I'm just handy being there.

Mum's lawyer, her executor is still assessing her estate and it will take a while to even get probate - and I legally can't do anything with the house until then anyway. I'm just stuck in this limbo until the very earliest November and can't do anything legally or otherwise.

Thanks for taking the time to reply, I apprecaite it

 

[Imogenlily]

I am sorry to read about the difficulties that you are having @Imogenlily. First of all you are not selfish, there really is no reason why you have to become a carer for your father-in-law. I do think that his children are out of line to expect you to take on that role especially as they do very little in that regard.
I think that you need to make it quite clear to his children that you are not prepared to be his carer and that they as LPOA have to make arrangements for that care. Failing that you could contact social services and explain the position, that you have your own health problems and that you are not willing or able to care for your stepfather. No matter what anyone says - you are not responsible for him.

Thanks for your reply. I'm just really tired of caring for people in general. I mostly get on with my step-sister but there's a definate reluctance for her to take over his care. She'd never say I have to look after him/become his carer, but I just get this vibe that 'I'm here, so why can't I'. I really think she's in denial about how bad he's getting. I'll tell her xyz has happened and I mostly get 'that's worrying' but no action.
I had to push for her to get the LPA with her brother because I'd gone through it with mum. She's apprantly contacted adult social services and was told until he's actually homeless they can't do anything - I can't put the house on the market yet because a) he has the right to stay until at least November or as long as the house is sold and b) because we're still waiting for mum's lawyer, her exectutor to calculate her estate and it'll be ages to get probate and legally I can't do anything until then anyway - and I've got no idea how long that'll be - and once I put the house on the market how long that'll take.
I'm also worried if I kick him out while the house is selling a) I'll look awful - he's 84. b) his kids might take me to court to try to sue for the value of the house. The house is solely in mum's name (she paid off the morgage when my dad died way before she met him). The house is now technically mine but it's going into a trust so I don't have much control. I'm worried they'll argue he helped maintance house etc over last 28 years. And even if they *don't* do that - there's already such a bad atmospehere, I don't want to make it even worse. I wish I could just switch off and hand him off to someone but I can't force his kids to do that and until the house in on the market apprantly no one else will help either

he's the kind of person who'd live into his 90s because he's fundementally pretty selfish (he's never phoned his grandkids, bothers with other people - but used to put on a show of being 'nice' only to be a ****-apple at home.) He's just so ungrateful and it irratates me when I lost mum.

I just feel lost about how to cope with him and grieve mum while I'm in this limbo and have no idea how long it'll be for.

Thank you for taking the time to reply, I really appreciate it.

 

[Violet Jane]

Well, you can refuse to deal with correspondence. Bundle it up and send it to your stepsister or, better still, get the post redirected to her home. If your stepfather wants to talk about it tell him to speak to his daughter.

Do not have anything to do with appointments. Refuse to take or make calls, take him to appointments, chase things up etc.

Tell your stepsister that these things are HER responsibility.

If your stepfather has a fall call an ambulance. Don't try to get him up.

Make sure that you have a room with a lock which your stepfather is not allowed to have access to. You need your own privacy.

 

[sdmhred]

I would echo the above @Imogenlily

Try to be as hands off as possible and any difficulties medical wise call the ambulance- if he goes to hospital you can tell them you are not his carer.
I think you previously said being out was hard for you - apologies if Ive got that wrong. If I have I would be out of the house and building a post caring life as much as you can - if he cant manage in your absence - so be it - in the long run it would alert others that he needs the help.

You have no responsibility to be his carer.

 

[jugglingmum]

If your stepfather has a fall call an ambulance. Don't try to get him up.

I agree with everything said by violet Jane but this was the big that jumped out most. Every time am ambulance is called you ask them to make an SS referral. Without evidence SS won't doing anything. Your step father needs a care home but SS won't act as he is safe with you covering. Lots of falls recorded demonstrates he isn't safe.

I do recall you struggling around the time your mum was sectioned.

I'm assuming you are on ADHD forums. My daughter has found them helpful to manage.

Getting out of the house is a good idea. A short walk round the block or a bus ride somewhere will release good endorphins. I'm not sure what you can manage with cfs.

 

[Imogenlily]

Well, you can refuse to deal with correspondence. Bundle it up and send it to your stepsister or, better still, get the post redirected to her home. If your stepfather wants to talk about it tell him to speak to his daughter.

Do not have anything to do with appointments. Refuse to take or make calls, take him to appointments, chase things up etc.

Tell your stepsister that these things are HER responsibility.

If your stepfather has a fall call an ambulance. Don't try to get him up.

Make sure that you have a room with a lock which your stepfather is not allowed to have access to. You need your own privacy.

That's true. I'll talk to her about re-directing his post, because he keeps loosing it or it just confusses him. I had to take over mum's post for the same reason. The other issue is the phone. He has a mobile and we have a house phone. He gets very confused when using his mobile (my mum wasn't able to use a phone at all in her final year) and he'll call me to sort something out - I don't feel I can say no. I personally don't think he's capable of using a phone but I can't stop him using one. My step-sister knows he's getting confused by all this.

My step-sister does actually handle his appointments mainly because I can't drive. He's now at the memory clinic but they aren't doing much. Right now the issues are more on his day-to-day living. My step-sister does come when there's emergencies but it's not the same as being fully hands-on.

It just feels eerily familiar and because of mum I sort of know what's going to happen - I know each case of dementia is different but I can see some similarities. I just hope he doesn't end up with delusions and hallucinations.

I don't get my step-dad up. I did it once with my step-sister's husband's help and he said he wouldn't do it again, so I automatically call an ambulance - despite him always insisting I just get a neighbor.

I almost had to put a lock on my door with my mum because she would keep barging into my room every ten minutes. I'm a bit luckier with my stepdad because he sleeps downstairs and can't really use the stairs - having said that, he did try to go up them about a month ago because he was convinced he had to read the gas metre and that it was in the bathroom. It almost have me a heart attack seeing his staggering on on the stairs. His daughter told him off about that thankfully. He's really his own worst enemy in this because he's so unwilling to accept help.

But thanks again for your reply.

 

[Imogenlily]

I agree with everything said by violet Jane but this was the big that jumped out most. Every time am ambulance is called you ask them to make an SS referral. Without evidence SS won't doing anything. Your step father needs a care home but SS won't act as he is safe with you covering. Lots of falls recorded demonstrates he isn't safe.

I do recall you struggling around the time your mum was sectioned.

I'm assuming you are on ADHD forums. My daughter has found them helpful to manage.

Getting out of the house is a good idea. A short walk round the block or a bus ride somewhere will release good endorphins. I'm not sure what you can manage with cfs.

Thanks for your reply. I agree Violet_Jane is right. I just find it really hard to say no - especially if he's calling me to sort out his phone, some mail etc. Obviously I have to help him after a fall. I never try to get him up. I did that once when my step-sister sent her husband round to help and he's refused to do it again (thank God).

I had no idea about asking paramedics about an SS referal. That's a great idea, thank you. The falls are quite random but usually after a fall he'll have another one shortly after. It's just pure luck he hasn't seriously hurt himself so far.

I agree he needs a care home, but my step-sister thinks he'll be OK in a wardenated flat where he's fully independent but has a help button - my next door neighbour who is the only one who comes in and used to work in care told me just let her put my step-dad wherever she wants (she agrees he's past a wardenated flat) because he's not my responsibility. Ultimately I have to sell the house, it's too big to manage by myself it's fallen into disrepair when I was caring for mum. I'm just exhausted in general.

I'm not on any ADHD forums yet, I only got a diagnoses late last year and I just didn't really have time to sort anything out after my mum was sectioned, but I'll definitely check them out. This forum has been a God-send for me.

I agree about getting out. I can be a bit of a hermit so I need to really make myself do that. THanks so much for the advice, it's really appreciated.

 

[canary]

I agree he needs a care home, but my step-sister thinks he'll be OK in a wardenated flat where he's fully independent but has a help button - my next door neighbour who is the only one who comes in and used to work in care told me just let her put my step-dad wherever she wants (she agrees he's past a wardenated flat) because he's not my responsibility.

I think your next door neighbour is right.
Moving him to a warden assisted flat will probably be a wake-up call to your step sister. She may even find that they either wont accept him, or pretty soon afterwards they will ask him to move out.
But whatever happens, it is not your responsibility

 

[Violet Jane]

If a warden assisted flat is the quickest way to get him to move out I'd go along with it. Let your SIL pick up the pieces. You've done enough.