Does it ever get easier?

[Fedupandstressedout]

When you have a family member with this cruel disease? Do you ever just accept it's part of life?

FIL has a diagnosis of vascular dementia and Alzheimer's. He's in his 80s and lives with MIL in their home, she's in her 70s. He's becoming more and more stubborn, refusing to eat, drink or bath frequently. Obsessing about certain things. Keeps sleeping in the day and waking at night Obsessively checking doors, windows and lights. Gets really shouty and in your face, can shove around and say really nasty things. Then gets all sad and apologetic and says he doesn't mean it. MIL has popped out before to see a friend in the next road over and he has wandered off trying to find her. Forgetting really simple things too now like grandchildren's names or where we live. The smallest thing can cause him to kick off.

Refuses to entertain a care home or carers and thoroughly denies he has a problem. Have tried a few days respite recently but they said he is "too able bodied" and the aggression is too much. But surely it's going to come to a point where he cannot stay in his own home? He cannot do anything himself and it's like she is a prisoner in her home now as she cannot leave him for fear or wandering off yet he refuses to leave the house at all.

It's so stressful and that's just me as a daughter in law. I feel sorry for him of course but if feel sorry for MIL having to live like this. And for my DH to see the decline and the way his lovely mum is treated.

It's such a cruel disease, I genuinely wouldn't wish it on my own worst enemy

I could gave written this exact post a few months ago, we have experienced all of this with DF, it is horrific watching this happen. It got very scary and DF was sectioned, even that makes me feel guilty but we couldn't cope, we were becoming scared of him. He is still in a MH unit specifically for Dementia as he started refusing medication which had been helping massively. I had another call last night telling us he's being difficult again so I doubt very much he will ever get moved on to a specialist care home which when he is lucid asks for us to arrange.

I cry everything I leave because I watching my DF disappear before my eyes and I'm helpless. I feel your pain.

Yes and no is the answer to that question. Mostly no - it's a cruel disease. But there are easier stages.

My Mum had it. The worst part was the stage you're in now. Leaving the house at 5am on a Sunday for GP appointments and having to be brought back by a kindly neighbour who'd noticed her waiting outside the surgery. Unplugging the appliances including the freezer. Distressed calls about "people" in the house, losing bags and money, screaming rows about how I had left her to walk home from the hospital on her own -- and so much more. She lived alone. It was truly terrible.

Eventually a bad fall, admission to hospital and from then admission to a care home. Against her wishes but for "respite" and "recovery" from her fall.

She then entered a sort of parallel world. She was happy. She was loved and fed and clean and cared for and thought she was at work or on holiday or visiting her friends or even at home, (she told me how pleased she was with the new furniture "she'd chosen". She didn't know who I was or who my son was but she told us about her lovely children (in her head I was still a child).

And it was a strange but ok period for me and for her. The care home were good.

Work with the people who have experience of this - it can make a huge difference.

Sadly, I think the answer is 'It depends'. Like @briansgardenshed , we found the constant rages and repeated crises when MIL was still at home with FIL exhausting, both mentally and physically. When she was sectioned and had experienced professionals looking after her, it was a great relief not to have to worry about what might happen next. But regularly visiting a distant hospital was still time-consuming, and she was constantly on our minds. And, now in a specialist dementia home, still is. Visits don't seem to be in any way life-enhancing for anybody. MIL is only momentarily happy if she thinks we're somebody else: a long lost sibling, a grandparent, a best friend from her childhood. Her children and husband and useless in-laws can go to hell.

I know - it's really not easy at all. We were lucky with the care home but it was a commitment - driving every weekend to visit - and sometimes she was asleep. But it could have been worse. 💐💐to all those dealing with this horrible disease.

Here to echo the others. The stage you are in is the worst, because he knows that there is something wrong but doesn’t know what it is. In the future there will come a point where he accepts external
care, and external care becomes both necessary and possible.

It is an incredibly difficult and sad situation for everyone, and you have my deepest sympathies

Just wanted to add some practical things you can do now @Fedupandstressedout.

If he's wondering you need a Herbert Protocol. It will make it easier if, God forbid, the Police ever need to search fir him.

Just google the county he's in and police and Herbert Protocol. So for instance Surrey Police Herbert Protocol. All Police seem to have different ways to do it for some reason. Once you've filled it in, make sure it's easily available, like saved on your phones for you and DH and any siblings.

Then fill in the This is me booklet and again keep it on your phone. We did this and when DN

Sorry posted too soon by accident.

We filled in the This Is Me and was able to email it over to the Hospital when DMIL was admitted with Delirium during lockdown. We then emailed it to the Home where she was eventually moved to.

Don't stress over him not eating much either. It's a fairly common symptom and they often seem to prefer sweet things. Try him with things like Jelly Drops to help with hydration. Older people usually enjoy them served in a nice bowl, it reminds them of treats from their childhood.

For the Carer's, I've read threads where they've employed a local Carer and introduced them as a friend, staying with them for the first few visits and just having a cup of tea and a chat before eventually "popping out" whilst the carer stays. I don't know if an approach like this would help?

I'd also ring the Admiral Nurses. There's a list here of what they can help with.

Our DMIL had Vascular Dementia but developed Delirium, which needs urgent medical attention. Have a read about Delirium here.

Can I ask something as well. For those who had relatives with Dementia who were eventually sectioned. How did you get them sectioned and how bad was it before? Just thinking if the future as M is showing early signs of Dementia.

I'd say very few dementia patients get sectioned. There aren't the hospital places available for a start.
With MIL, there was a drastic decline following a fall that resulted in a hospital stay. She'd previously been having the standard assessments and memory tests. We hoped it was delirium that caused her to become repeatedly violent, using whatever she could find to hand as weapons, but sadly she never reverted to her pre-fall condition, and had become, and remains, in a constant state of unpredictable anger and depression. After a series of crises involving multiple calls to emergency services, all of which we reported to her GP and social services, a psychiatric team came to the house to assess her.
She was sectioned because she was a danger to others, her husband in particular, and medication was failing to control this. If it wasn't for that, I think the family would have been left to handle her.

Can I ask something as well. For those who had relatives with Dementia who were eventually sectioned. How did you get them sectioned and how bad was it before? Just thinking if the future as M is showing early signs of Dementia.

There was zero support during the pandemic. Couldn't get any help. Mum became increasingly violent. Calls to crisis and support teams went unanswered. In the end, called the police, who took her to A&E.

Thank you @DahliaMacNamara & @CornishGem1975 for sharing your experiences and I'm so sorry that things were so desperate before you received any support 

One thing I forgot to add @Fedupandstressedout is to apply for Attendance Allowance if you haven't already.

Don't download the forms yourself though. Phone the Helpline and ask them to send the forms out, that way, if it's been granted it will be backdated to the date you called.

Has your DFIL got a SW yet?

@SiouxsieSiouxStiletto my DF was sectioned under Section 2 in January. I actually kept a diary of what was happening (I think someone on here suggested that) it was helpful as tbh things were happening so fast and we were lurching from one problem to another. DF was shadowing us particularly myself and DM, was trying to control who visited, who was allowed to leave the house (DM was not allowed to leave), became physically threatening, held a lighter to my face, swearing, making threats, searched a neighbours house looking for DM etc

We had a social prescriber via DR who deals with dementia and are called SS they came out and witnessed me being threatened, mum in tears etc. We had to remove ourselves from my DF 4 hour rant at us and stay at my home while some male relatives stayed with him.

SS them asked that DM not be left alone with DF due to the aggression and I said we would but its not sustainable and we have families and jobs, I explained we had been threatened and sworn at for 4 hours non stop after SS visit and could no longer cope. We had MH nurses out DF threatened them. SS then contacted a man who was independent to see DF and he assessed him, then a psychiatrist, independent Dr and a social worker came out and DF was sectioned and was trying even then to resist and not leave the house. That was probably one of the most stressful days of my life.

6 months later DF is still in the secure unit now under Section 3 of MH act, this is because he is refusing medication. DF was about to be moved on to a care home when he started refusing meds this has continued on and off the last few weeks.

I don't think he will ever be moved on to a care home, he has deteriorated further and no home wants him and they can't lift the Section as he needs his meds and a home can't force him to take them more hide them in his food.

@CornishGem1975 we called the crisis team for help in January we were told we would get a call back in 24 hours, we heard from them 2 weeks later AFTER DF had been sectioned.

My dad was like this. He was sectioned in 2021 and later moved to a care home, where his mood has generally improved. In his case there were specific things about the house which were increasing his fears (he didn't feel safe but refused to leave)

First step was to contact GP with concerns. GP then called my dad in for a check up. At the same time we contacted the social care team for older adults. Sectioned on a section 2 then a section 3 then moved to a care home near me.

Does it get easier? Yes, I think so. I have regrets and remorse, but in the circumstances, now it's better than 2 years ago. There is grief though. You can't escape that.

Like @Tara336 , our experience of 'urgent' and 'crisis' help gave a whole new meaning to the words. We also had call backs weeks after MIL was in hospital.

She presents very similarly to Tara's DF. The section was only lifted after 7 months in order to put the DoLS in place; I understand the two cannot run concurrently. As a small and rapidly shrinking woman, she poses less of a physical threat than an average man. She can still chuck tables and chairs about the place, though. And does.

@DahliaMacNamara yes we had Dols, he was placed on that in February as at a CPA meeting they said he couldn't return home but wasn't bad enough to stay on section, at the meeting I queried so many things that the Dr's etc said as they just didn't match our experience at all but we were told we were wrong and they were right!

Fast forward a few weeks and we were being chased by our (appalling) SW who wanted the financial assessments done ready to move DF. I had to tell her he was now under Section 3! I've tried and tried to get a new SW as she's very rude and disorganised but I've had no luck.

We were told DF is now ready to move on to a home while still refusing meds, we have had loads turn him down due to past history, SS refused to send him to another that would accept him because they won't pay for one on one care for 2 weeks induction the home insists on, the next home sounded great but on the day of viewing the staff called to say the homes being closed and they bare losing their jobs.

The last few months have been mentally and physically exhausting, to visit DF is a 2 hour round trip and being nearer us would be so much better, but he's deteriorated further, no homes will take him and he won't take his meds so needs to remain on Section. I have today told mg family someone else needs to step up and deal with some of DF admin as I am absolutely burnt out.

Hi all.

I've popped back to chat about this more. It's still a shit time. FIL rarely gets out of bed now. He's barely eating or drinking and won't do anything unless he is reminded. Even then he needs MIL to shower him and to feed him as he can't use a knife or fork. He can't even make himself a glass of water let alone anything else.

He's become incontinent at night and he completely forgotten my name, the grandchildren's names and my husband name (his son).

The aggression got so bad he's been medicated with rispiridone which has helped greatly but he's a shell of the man he used to be. It's incredibly sad.

He had a social worker and a mental health worker who are very supportive.

MIL is beginning to think about putting him in a care home but also feels guilty, as do we as we can't really help with him much because of our jobs and the kids.

I hate this, I really do. Is it wrong we all wish he would just go to sleep one day and not wake up 😭

A care home is the answer here.
What he needs now outweighs what he and you want to happen.
He wouldn't want this life for you and his wife would he? Then no need for guilt. Just act in his best interests and start looking.
Think long term. Other peoples physical and mental health is just as important.

He needs to be in a care home. There's no point anyone feeling guilty. It's 💯 the best place to be when their care needs get to this level.

Thankyou. It's just very sad when you are having to make these decisions about a parent (or an inlaw in my case). I think it needs to be done for everyone's mental wellbeing and my mother in laws physical wellbeing. He may be frail now but he's still taller than her and having to support him when walking around is making her have pain in her back and shoulders. She's exhausted due to the sundowning, he keeps waking at night and asking if they are going for a walk.

Poor poor bloke, 20 years of knowing him and he would be mortified if he knew we were having to help him this way

Please don't feel guilty about considering a care home, my DF is now in one after an 8 month battle with SS that had me close to a breakdown he is in the first home we viewed and liked. Physically DF looks so much better as he has 24 hour professional care, he's clean, co-operative (was so difficult for us but sees staff in home as in authority) and isn't eating much but is definitely eating better. For our sakes and DF the home was an excellent decision we just couldn't cope with the aggressive behaviour, incontinence etc. He does ask to come home but none of us could go back to how we were living and DF is in a lovely place now and we don't have to worry

One of my grandmothers was similar when she developed Alzheimer’s disease. She lived alone and became moody, very paranoid and occasionally aggressive.

Once she finally agreed to move into residential care, she became gentle, smiley and contented. The pressure was off, I suppose.

My other grandmother also had a form of dementia, but I’m unclear which kind it was. When in residential care, she went through a stage where she refused to get out of bed and would hit her carers when they tried to get her up. We thought she must be nearing the end, but after a few months, my grandmother began getting up and seemingly enjoying life again.

I don’t want to give anyone false hope, but in my (very limited) experience, people with dementia don’t necessarily become increasingly unhappy. They adjust to their changing situation and whilst they might have moments of fear, bewilderment or sadness, these are often forgotten within a few minutes.

The sundowning and night time waking are especially difficult - the night time waking is a firm criteria for care home admission. There comes a point when you have to stop seeing the person with the dementia as the priority and refocus on the carer, and with hindsight it's always later than logically it should have been. We all hang on just that bit too long.

Now is the time to refocus on your MIL. My Dad wasn't happy about Mum going into a care home, but she was awake a lot during the night and would wander off at speed out of the house. And Dad was ill himself. The care home staff were brilliant with him - said we'll care take of her so you can be a husband again, which was a lovely way of putting it.

The staff will have the skills, strength, equipment and energy to care for him better than your MIL or your family can. They will never love and care about him as you all do, but will give you all the space for that love and care to be, rather than worry taking over. Please don't feel guilty about a move into care home

Do think about whether the prospective home offers nursing. Some care homes don't. The person with dementia can have changing needs and if nursing care is required further down the line, the care home can boot them out at very short notice.