The week of hell

[AbbyGee]

Long rant - many apologies in advance but I need to unload.

It's been a week from hell. Many ups and downs. Not much sleep. A lot of tantrums - not from me although I'd dearly love to go off on one.

Friday: Sitter from care company arrived. Very switched on lass. I had to go to the Post Office - a quick ten minute trip - and on my return found the OH in an unsettled state. She said could see my OH becoming more and more agitated and anxious for the few minutes I was out of sight. I think she witnesses his self head punching. She agreed that getting different carers each time was of no benefit to either of us and will take this up with the manager to try and arrange some continuity. She also suggested they may be able to come up with a day centre or day care idea but I really don't know how he'd react to this.

Managed to get OH into bed around 11pm. He seemed more relaxed by that time so I went downstairs for an hour of peace, wine and general mindless faffing about.

Half an hour later he came downstairs wearing only pyjamas. Like a switch had been flicked he was in aggressive and bizarre mode, banging things about, trying to leave the house and calling for help. He then curled up on the floor in the cold vestibule, refusing to move or speak. I coaxed him back to the kitchen for a warm drink but after a few minutes he was on the rampage again, self head and chest punching, being aggressive towards all and everything and generally scaring me.

At 2.40am I called 999 as I was simply unable to cope. The ambo hadn't arrived by 6am but he'd tired himself out so I called them off and got him back to bed.

After a few hours of unrested sleep he got up and started the rampage again, finally slumping on the bedroom floor and refusing to respond. He wasn't injured so I covered him and left him for half an hour.

I was becoming increasing concerned so, at 2.35pm called 111. Took over an hour to get through. Had call backs and they upgraded the call to a 999 (non-life threatening) and I did 10 minute checks to make sure he was still OK.

Ambos arrived 11pm by which time he'd come downstairs and was calmer although still anxious and wanting to break out. The female Paramedic had been a carer for many years so was aware of host-mode etc. and managed, albeit with some difficulty, so do their checks whilst I talked the other Para through the events leading up to me second call of the day. The OH was declared free from any infection signs and I said that I felt a hospital visit would not be of any benefit by that time. Paramedic and I had long chat and she called to Adult Mental Health team to look at speeding up his next assessment, see what's possible with respite, and to get more help here.

We have now, apparently, been put on the 'at risk' register or whatever it's called in these circumstances.

Paras left around midnight and I got us both back to bed. Mental Health team call at 20 past midnight. I'll talk to them tomorrow (Monday) because this situation is escalating.

Today (Sunday) it's a repeat performance of yesterday. Much self punching (broke his specs again!), mistrust, wishes of suicide. Non-recognition that this is our home or who I am although that's pretty well par for the course recently. OH is now slumped on sofa, refusing to take and food or drink. So long as he's warm and safe and not breaking the place up I shall leave him there for the time being and try again later.

He's is starting to get smelly but the suggestion of a shower is not taken kindly, so I've not showered either as I dare not leve him alone. Thank heaven for baby-wipes! I'm so tired my brain is stiff. I think my eyeballs are in the wrong sockets. I'm cold inside, not to mention hungry, but the thought of food makes me nauseated.

I'm still waiting to hear about a meds change following a visit to the GP on 12th when the shiny new doctor said he would refer to the Adult Mental Health Unit who my OH has a review appointment with in December.

The time is nearing, I think, to consider residential care but until or unless I can get him a proper assessment I don't feel in a position to make that decision. I'm too close to the situation.

There's so much help and advice offered but, quite frankly, talking doesn't help me much. However, as I see it, the rest of the day will be spent as quietly as possible in the hope that tomorrow will bring about the start of some sort of real resolution.

Just as I was about to post this the OH roused himself and is a different person again. He's convinced the house has changed. Doors are bigger, windows are smaller, there are things he's never seen before. At least he's had a banana and one of his favourite Pain au Chocolat breakfast breads.

Although he's only in PJs, dressing gown and slippers he's wandering in the garden.

Peace reigns, if only for a while. Ahhhhh ...

 

[Banjomansmate]

Reading your post, I think you have to make that decision for both your sakes because you certainly cannot continue like this. One or other of you is going to get injured and if it is you then your husband will end up in care anyway if you cannot look after him.
Wishing you a peaceful day.

 

[Violet Jane]

My goodness! What a dreadful time for you. I’m no expert but I certainly think that you have reached the point of residential care. Your OH’s behaviour is extreme and is putting both of you at risk. He might need to be sectioned. He cannot remain at home whilst he is behaving in this way.

 

[MartinWL]

It must be clear that emergency admission to a mental hospital is essential. You are in touch now with the emergency mental health team, so be firm with them that you cannot cope and he must be taken to hospital, probably by being sectioned. He is obviously well past being cared for at home. As @Violet Jane says you are both at risk.

 

[lollyc]

o

Long rant - many apologies in advance but I need to unload.

It's been a week from hell. Many ups and downs. Not much sleep. A lot of tantrums - not from me although I'd dearly love to go off on one.

Friday: Sitter from care company arrived. Very switched on lass. I had to go to the Post Office - a quick ten minute trip - and on my return found the OH in an unsettled state. She said could see my OH becoming more and more agitated and anxious for the few minutes I was out of sight. I think she witnesses his self head punching. She agreed that getting different carers each time was of no benefit to either of us and will take this up with the manager to try and arrange some continuity. She also suggested they may be able to come up with a day centre or day care idea but I really don't know how he'd react to this.

Managed to get OH into bed around 11pm. He seemed more relaxed by that time so I went downstairs for an hour of peace, wine and general mindless faffing about.

Half an hour later he came downstairs wearing only pyjamas. Like a switch had been flicked he was in aggressive and bizarre mode, banging things about, trying to leave the house and calling for help. He then curled up on the floor in the cold vestibule, refusing to move or speak. I coaxed him back to the kitchen for a warm drink but after a few minutes he was on the rampage again, self head and chest punching, being aggressive towards all and everything and generally scaring me.

At 2.40am I called 999 as I was simply unable to cope. The ambo hadn't arrived by 6am but he'd tired himself out so I called them off and got him back to bed.

After a few hours of unrested sleep he got up and started the rampage again, finally slumping on the bedroom floor and refusing to respond. He wasn't injured so I covered him and left him for half an hour.

I was becoming increasing concerned so, at 2.35pm called 111. Took over an hour to get through. Had call backs and they upgraded the call to a 999 (non-life threatening) and I did 10 minute checks to make sure he was still OK.

Ambos arrived 11pm by which time he'd come downstairs and was calmer although still anxious and wanting to break out. The female Paramedic had been a carer for many years so was aware of host-mode etc. and managed, albeit with some difficulty, so do their checks whilst I talked the other Para through the events leading up to me second call of the day. The OH was declared free from any infection signs and I said that I felt a hospital visit would not be of any benefit by that time. Paramedic and I had long chat and she called to Adult Mental Health team to look at speeding up his next assessment, see what's possible with respite, and to get more help here.

We have now, apparently, been put on the 'at risk' register or whatever it's called in these circumstances.

Paras left around midnight and I got us both back to bed. Mental Health team call at 20 past midnight. I'll talk to them tomorrow (Monday) because this situation is escalating.

Today (Sunday) it's a repeat performance of yesterday. Much self punching (broke his specs again!), mistrust, wishes of suicide. Non-recognition that this is our home or who I am although that's pretty well par for the course recently. OH is now slumped on sofa, refusing to take and food or drink. So long as he's warm and safe and not breaking the place up I shall leave him there for the time being and try again later.

He's is starting to get smelly but the suggestion of a shower is not taken kindly, so I've not showered either as I dare not leve him alone. Thank heaven for baby-wipes! I'm so tired my brain is stiff. I think my eyeballs are in the wrong sockets. I'm cold inside, not to mention hungry, but the thought of food makes me nauseated.

I'm still waiting to hear about a meds change following a visit to the GP on 12th when the shiny new doctor said he would refer to the Adult Mental Health Unit who my OH has a review appointment with in December.

The time is nearing, I think, to consider residential care but until or unless I can get him a proper assessment I don't feel in a position to make that decision. I'm too close to the situation.

There's so much help and advice offered but, quite frankly, talking doesn't help me much. However, as I see it, the rest of the day will be spent as quietly as possible in the hope that tomorrow will bring about the start of some sort of real resolution.

Just as I was about to post this the OH roused himself and is a different person again. He's convinced the house has changed. Doors are bigger, windows are smaller, there are things he's never seen before. At least he's had a banana and one of his favourite Pain au Chocolat breakfast breads.

Although he's only in PJs, dressing gown and slippers he's wandering in the garden.

Peace reigns, if only for a while. Ahhhhh ...

Oh @AbbyGee I feel for you. I thought my week was bad, with constant talking, often in french, but it was nothing like yours.

Don't dismiss daycare or similar without giving it a go. There really is no telling how he will react, but with luck, he'll switch on host mode, and love it.

In the meantime he needs medication, and he needs it now - whether that is from GP or Mental health team. You cannot be fobbed off and made to wait weeks, this is an emergency. A GP should be able to prescribe some sort of sedative, even if only as a stop gap.
Unfortunately, as others have said, it may be that residential care is the only option.

 

[Jessbow]

Please dont put yourself at risk of harm, if he gets aggressive, keep out of his way and ring for help _ PLEASE.

Sometime the do-do has to hit the fan for anything to happen, and it sounds like something needs to happen, and soon!

 

[AbbyGee]

He's now returned from his little wander in the garden and is contentedly looking at some books. To see him you'd think he was just the bumbling, forgetful, kindly old gent that is so often depicted in images of people with Alzheimer's.

I shall keep my phone with me to try and capture more video but when he's on a rant but it's not the first thing that springs to mind when trying to talk him down or keep out of the way. I very much fear I shall be treated as an exaggerating liar unless I can provide evidence as he's top-notch when in host mode and has never 'gone off on one' in front of other people.

I've kept a diary of sorts of what seems to affect him, when and how, and will go back through it to collate the odd notes from various places to try and make some proper sense of it.

Thanks for all your kind words. I know I need to take action. In fact, I've probably known for some time.

I must get the POA forms sent off this week. It's too late to get his will changed to reflect what he wanted before lockdown when he was more compos mentis but hey-ho ... it's only stuff.

For my part, I've worked out a budget of what rent I can afford (for me) if or when he goes into residential. I could just about manage on my own so long as I don't try and live the high life. I wouldn't want to live here alone and neither could I afford the upkeep. I've started from scratch before with only what I could carry so that's no big deal and a more refined relocation would give me some home comforts. House and contents sale proceeds would allow him more financial backup for the future.

 

[Violet Jane]

I think that a lot of people (myself included as I have not, thankfully, experienced this) think of dementia as just memory problems, perhaps leading to needed help with every day activities. They are not aware of the extreme behaviours that some people with dementia exhibit: aggression; paranoia; delusions; inappropriate sexual behaviour.

 

[Duggies-girl]

@AbbyGee I think you need to look very closely at the finances before you make any decisions about the house, maybe even professional advise to make sure that you are not left in a financial mess. Is the house in his name and are you married or over 60

Don't leave yourself short, it's not fair.

 

[Sarasa]

Hi @AbbyGee, if the same thing happens again and you are worried about your safety, shut yourself in a lockable room and call the police. It sounds drastic but that might get your husband the help he needs.
Certainly I'd get on the phone to everyone you can think of tomorrow to try and get something sorted.
Eventually your husband won't be able to keep up the host mode. I know my mother's doctor thought I was worrying over nothing until mum had a meltdown in the surgery, threw her medication around and accused them of poisoning her. That got them going at helping me sort things out.

 

[AbbyGee]

@Duggies-girl House is in OH's name only and is mortgage-free. Yes, married 1992 and well over age so I appreciate I could stay here but don't think I'd want to. Too big and expensive to keep running. Too much of a reminder of dashed hopes and dreams.

My State pension slightly reduced as I was in an 'Opted Out' scheme for a number of years. I receive personal pensions from previous employments so although I'm not rolling in money I could manage. There's the Winter Fuel Allowance - not to be relied on - and the huge £10 Christmas Bonus as well - whoppeee! It's amazing how much can be done with very little. Been there, done that, got the tee-shirt although I was quite a few years younger and more energetic at the time.

I think I'd have entitlement to some of the sale proceeds but working on the basis that I don't then anything I get would be a bonus rather than a deal-breaker. I'd rather my OH's financial situation was secure.

On a brighter note, my £1 premium bond still stands a chance of giving me a little windfall, eh?

 

[Seaholly]

Hi @AbbyGee, I've seen a lot of adverts for Santander popping up on social media in the last few days about free financial advice for people connected with dementia.
I can relate to the living nightmare scenario you describe and share your frustration that the rest of society still sees this as a disease for 'bumbling old people'.

In many ways, I'm lucky because the abuse I get from mum is all verbal or lack of cooperation, without aggression apart from toilet rolls being flung across the room. The risk of physical injury to either of you is a whole different thing and I would urge you to at least start researching specialist care now, so that if and when you make a decision, you aren't forced into making a snap decision. Easier said than done, because no care home will say, "actually, we're not that great" but personal recommendations and maybe an off the record chat with a local GP could help?

Above all, do as I say not as I do and take care of yourself!!!

 

[Little moth]

@AbbeyGee It sounds horrendous, I hope you get some proper help soon. x

 

[Violet Jane]

I think that your position is complicated legally, AbbeyGee. I would try and see if you can get some legal advice before you make any big changes.

 

[AbbyGee]

@Violet Jane Maybe I'm being too simplistic but
1) I find a flat and move into it, taking from the house only personal stuff and what I brought here (or the equivalent of) when I first moved in.
2) House and contents sold - proceeds go to my OH.
But that's not the immediate concern. I want to get our situation stabilised one way or the other.
Although having said that - my most immediate concern is that his perishing agitation is starting up again so I'll put on my cool, calm and collected head and count slowly to 100.

 

[Violet Jane]

Take care of yourself, AbbeyGee.

 

[MartinWL]

I think that your position is complicated legally, AbbeyGee. I would try and see if you can get some legal advice before you make any big changes.

I strongly agree. Do get a solicitor with special knowledge in this area of law.

Urgent priority is POA or if it proves to be too late, apply for Deputyship asap. Without these your path will be strewn with boulders.

You are doing well in making financial contingency plans and moving to a more easily managed property sounds wise. But your big problem is that you don't own a brick of the house. I believe a husband has obligations to provide for a wife but you do need good advice from a good lawyer. You will get plenty of practical advice here but we don't have all of the details and a lawyer will be able to look at your specific circumstances.

 

[AbbyGee]

@MartinWL I somehow feel that not owning a brick of this place is a relief in itself. Not mine. Nothing to lose. But doesn't a wife have obligations to provide for a husband as well?

 

[MartinWL]

@MartinWL I somehow feel that not owning a brick of this place is a relief in itself. Not mine. Nothing to lose. But doesn't a wife have obligations to provide for a husband as well?

Yes probably but he seems to own the major asset... unless you have pots of gold in a vault or very substantial investments in your own name.

 

[AbbyGee]

@MartinWL It's not about money. It's his property. I've had the benefit of it for the last 30 odd years but don't feel I should suddenly become entitled.
I'm a survivor and can manage on my own income and what savings I've salted away. It wouldn't be the life of Riley but I wouldn't be facing life in penuary either.