No longer safe living alone

[eg1234]

Hi all, this is my first post. My father has mixed dementia and lives alone with carers visiting him 3 times a day (which he hates). Recently the number of concerned phone calls from the carers and his neighbours has noticeably increased. A few nights ago he fell in his back garden whilst digging up the drain (!?!) my brother was alerted by a neighbour and went around and put him to bed. 40 mins later he was back out in the dark digging again. He's frail and falling approx. once a month and life is clearly becoming more confusing for him.

We have reached that dreaded stage where we don't think it's safe for him to live alone but he is adamant that he is coping and he doesn't want to leave his home. I would like him to move in with my family. We have a converted garage with ensuite and I have a disabled child so I've already rearranged my life to be a home a lot. He also noticeably relaxes when I visit him and take charge. But like I said he doesn't want to leave his house.
I have referred him for a care needs assessment and I plan to have a frank (but kind) talk with him about his options within the next few weeks (I live at the other end of the country) Does anyone have any advice or experience of dealing with this situation? It is weighing quite heavily on my shoulders.

 

[jaymor]

Hi and welcome to the forum @eg1234 .

it’s great that you have accommodation that might be suitable for your Dad but personally I would think very hard about you taking on the caring role. Your Dad does not seem far of needing you to be there all the while with no breaks. It’s hard, I did it myself but I only had myself and my husband to worry about. You have a disabled child. you Will find yourself having to split your time between the two and realise that you can’t give the care to either that you want to give.

i would seriously look at care homes, possibly much nearer to you so visiting is easier and won’t eat into the time you have available.

Hopefully following the care needs assessment you will have a clearer idea of what you are facing. One thing to think about is, his care is not going to get easier thats for sure.

keep posting,

 

[eg1234]

Hi and welcome to the forum @eg1234 .

it’s great that you have accommodation that might be suitable for your Dad but personally I would think very hard about you taking on the caring role. Your Dad does not seem far of needing you to be there all the while with no breaks. It’s hard, I did it myself but I only had myself and my husband to worry about. You have a disabled child. you Will find yourself having to split your time between the two and realise that you can’t give the care to either that you want to give.

i would seriously look at care homes, possibly much nearer to you so visiting is easier and won’t eat into the time you have available.

Hopefully following the care needs assessment you will have a clearer idea of what you are facing. One thing to think about is, his care is not going to get easier thats for sure.

keep posting,

Hi Jaymor, thanks so much for taking the time to reply to my post. It was quite a sobering read and has certainly given me a lot to think about. My thought process is that I would be entering this next phase with the mindset that if symptoms appeared that we couldn't cope with, that I would look again at this decision but my gut feeling is that we need to give this a try (with the help of paid carers) for as long as we can handle...unless he chooses to move into a home now which is highly unlikely. I'll keep posting ;-)

 

[Sarasa]

Hi @eg1234 and a warm welcome to Dementia Talking Point from me.
It does sound like your dad does need more care, and I too would be wary of a move to your annexe. Maybe you could suggest he comes and stays with you for a 'holiday' or for a short while. You could then see if it would work out in the long term without burning your boats for a return home.
Does your brother see a lot of your dad, as it may be worth talking to him as well about what he thinks would be the best thing to do.

 

[CAL Y]

Hello @eg1234 . I’m very sorry to sound pessimistic but there are many people on this forum who have tried to do the same as you want to and failed.
If you were able to move your father into your home, the first thing would probably be a downturn in his behaviour because of the stress of the move.
looking after PWD is a full time job. Even if you had carers in 4 times a day you would still be left with another 20 hours in which he would need your care.

As you already have seen, your father will leave the house at all hours.
It would become almost impossible for you to have a full nights sleep.
Then, if he became too much for you to handle, which he invariably will, there will be the upheaval of a move into care.
Im sorry that I can’t give you much hope but most people on here have been there and even, like myself with no others to take care of it is exhausting.
My husband died 9 months ago and I’m only just regaining my strength,
My best wishes to you.

 

[Rosettastone57]

Don't do this, just don't. As others have said, there are countless posts on this forum where with the best of intentions, family members have moved loved ones into an annexe and shortly afterwards are looking to move the person with dementia out to a care home. You are facing a life where you will never be able to leave your father alone for a second. Even with carer visits , this will never be enough. At night, if he wanders now, then he will be up , not staying in the annexe , disrupting the household , you will be on tenterhooks wondering if he is safe.
Will you cope with double incontinence , refusal of personal care, being aggressive to your child, as your father will demand all of your attention.

Of course, you can dismiss me as overly dramatic , but your child deserves your full attention and you cannot with the best will in the world care for both successfully. If your father went into care, you can be his son/daughter , rather than a frazzled carer. He is never going to agree to a care home, but there comes a point where the persons needs become so great that they outweigh what he or family members want to happen. Your father needs 24/7 supervision, from a whole team looking after him , which means inevitably a care home. I'm sure that's not what you want to hear.

 

[Jaded'n'faded]

The first thing your would realise if you moved him in with you is that he's actually lot worse than you thought. Once you are with him 24/7, he'll no longer be able to make an effort/go into 'host mode' as he probably does now when he sees you, which makes you think he's not that bad... But think about the digging in the dark - can you really watch him all night? You have a child who needs you and dementia and children really do not mix well.

Don't do it - find another solution. A care home would be best, preferably one near to you. (If you don't already have Power of Attorney, get that sorted out ASAP.) Perhaps you could sell it to him with the idea it's just until you can get things sorted at your home so he can live with you. That day will never come, obviously, but he doesn't need to know that and you can be creative about the repairs you are doing, fixing the boiler, etc. He will never agree to a care home so please don't wait for that!

 

[Violet Jane]

Moving your father to the annex will almost certainly make him more confused as a change of home will be disorientating for him. It's unlikely that your father will stay in the annex; he will probably go out wandering, looking for his home or you. If it doesn't work out Social Services will have no incentive to support a move to a care home as they will consider your father to be safe living with you.

I agree with the poster above who suggested moving your father in with you for a short period of time as an experiment to see how things work out. That way you would have a more realistic idea of what you'd be taking on.

 

[MaNaAk]

Hello @eg1234 . I’m very sorry to sound pessimistic but there are many people on this forum who have tried to do the same as you want to and failed.
If you were able to move your father into your home, the first thing would probably be a downturn in his behaviour because of the stress of the move.
looking after PWD is a full time job. Even if you had carers in 4 times a day you would still be left with another 20 hours in which he would need your care.

As you already have seen, your father will leave the house at all hours.
It would become almost impossible for you to have a full nights sleep.
Then, if he became too much for you to handle, which he invariably will, there will be the upheaval of a move into care.
Im sorry that I can’t give you much hope but most people on here have been there and even, like myself with no others to take care of it is exhausting.
My husband died 9 months ago and I’m only just regaining my strength,
My best wishes to you.

I cared for my dad full-time and eventhough I was living with him he managed to fall and escape. I don't you should take this especially as you are a mother you won't be able to look after child. I felt my independence gradually disappearing until dad went into the home. A home is the only option you will have to use lovelies to get your dad there.

MaNaAk

 

[Valpiana]

It is unbelievably tiring/stressful/infuriating caring for a PWD,I agree with what others have said. Your child needs your attention, no matter how strong you think you are,caring for PWD will bring you to the brink of what you are physically and mentally capable of. Move him close to you to a Care Home so that you can visit regularly and so that he only has the upheaval of moving once. It is of course easier said than done,putting someone in a care home is heartbreaking but one person cannot cope with everything that dementia throws at you.

 

[AbbyGee]

Please, @eg1234, do NOT do it.
You have a child with needs. Your father will be another child but with, potentially, many more far-reaching and unexpected needs.
Don't do it. It won't be fair to anyone, let alone you.

 

[canary]

I tried mum living with me on a trial basis. My OH was already showing signs of neurological problems, so I wanted to see whether I could look after both of them.

I lasted a weekend.

Mum was much, much worse than I had imagined. She wanted me to sit and talk to her all day and wouldnt let me do anything else. She woke me up every half an hour during the night because she could hear "noises in the kitchen" (there was nothing). Eventually my OH, who was becoming more and more stressed, finally had a tonic/clonic seizure in front of mum, who just went into meltdown. I honestly didnt know who to attend to first. At this point I knew it would never work.

 

[JHA]

I have been in your situation. My mom has lewy body dementia and just before Christmas she wandered out of her house in the middle of the night - I got a phone call from the police just before 1am. I then tried to juggle keeping her safe and keep my family going - I have two teenage boys one is still at school and has autism. I basically tried to sleep on her sofa at night and then take her home with me during the day - I lasted just over a week and although her GP, Mental Health and the Crisis team said they would come up with a solution and help her nothing materialised so in desperation I found a local care home that would take her on respite.

That week with her 24/7 was a total eye opener she was up all hours, she would be talking to 'someone' in her bedroom, she could hear noises, she heard my son crying outside and when I refused to let her go into the garden at 2am in the morning she went for me. When a Doctor came on the Monday she was in host mode and was almost triumphant when she answered all his questions. After he left the hostess mode vanished and the dementia reared its ugly head.

My mom is still in the care home and although heart tells me to let her come and live with us I know it would not work. We would have to convert our garage which would mean she was downstairs during the night whilst everyone else was upstairs and the last time she stayed at ours with what we thought was a water infection (it was dilerium) my son avoided coming home as 'it was different'. My mom was very controlling before dementia and as much as I would like to give her a chance I know it is the wrong decision.

I admire you if you do decide to try it for your dad and wish you all the luck in the world.

 

[Wildflowerlady]

Sitting here early hour of morning I am reading your post and the replies given please listen to all the advice. Just yesterday one of many that I was thinking back to my dads dementia in its earlier stages and still remembering the heartbreaking day he had asked me if he could come live with my partner and I in our home. I do know dad had asked my sister. too and like me she had concluded it wouldn't work for her own personnel reasons. As much as I loved my dad I knew in my heart my life would become unbearable his mood could already be up or down and sometimes would be quite snappy. I had to say no to dad and I felt just awful, I know your dad hasn't asked you but it is something you are really considering doing so think very carefully and think of how much all your lives will change. I found it was hard enough going back and forth several times a week to see my dad my dad didn't live far from me, and even closer to my sister walking distance from her. I never knew how dads mood would be when I entered his home my dad did have carers going in four times a day as well. Dad was eventually doubly incontinent he had a catheter fitted during a spell in hospital earlier in his dementia just before the official diagnosis but started soiling more too. I had to on many occasions clean him up not great especially when he was a dad who I had never recalled seeing naked before. The awful soiled bedding when tummy upset but couldn't be waiting for a carer if he had soiled, Dad became quite aggressive as time went by and I was called upon to dash to his home one day as he was brandishing a knife at the carer who was terrified . I don't think she ever went back to dads again. All the sharp looking knives and scissors had to be removed he questioned why saying we had stolen his property eventually he forgot of course. My dad had never ever been violent had never sworn at anyone or made sexual innuendos but this man my dad did all these things just stopped short of hitting the carers but the threat was sometimes there and likely it was only a matter of time because of his dementia. How much might your dad change are you prepared for that and what effect it could bring into your home. My dad actually thought my sister hated him some days but she didn't she did love him I daresay he said the same about me. Dad thought her husband was going to kill him one day said he was prepared to fight him if he turned up all delusions of course but what if this was your dad living in your home how would your family feel? The carer provider concluded several months later dad could no longer be given their care in his home and notice was given to us and SS that care visits at his home would cease. My dad was then admitted to a care home it definitely wasn't what he wanted and he never would have agreed but we had to tell a lie to get him there saying it was just for a couple of days. I had the awful job of taking dad but once there I was quickly told the following day how very advanced his dementia was it was also mixed dementia. The manager said after speaking with me in her office that I was being far more realistic in my own assessment of dads needs than my sister. I was told it was highly unlikely dad could ever return home. Initially the admittance to the care home was for SS to assess him but they hadn't much choice anyway as the company that had been coming into dad had totally stopped their visits after dressing him the day he went in. My dad should have been in 24/7 care much sooner he was not able to be self funding, he hadn't yet started to wander but I was worried he would as he was living alone following my mums passing five years earlier. I received absolutely no support from my sister regarding appeal to SS to give dad more care sooner as she was so convinced he was better off in his home, this was despite many upsets that were obviously going on in the hours he was alone some of which she failed to tell me about until later on. I have times of enormous guilt at my decision not bringing dad to my home and how things were for dad at the end. I still cry thinking of it but in my heart I do know it was the right decision or at the very least it was the one I really had to make. I have a 79 year old partner that suffers with Parkinson's and I just couldn't look after both of them in fact I did have to eventually cut down what I had been doing for dad because of that. I was driving to dads home every other morning to get him out of bed detach his catheter and cook him breakfast before care service arrived to wash and dress him. Dad always wanted the same breakfast seven days a week and wouldn't accept anything else. My partner realistically wasn't receiving the care from me he really needed I was absent at least every other morning the worse time for him as its when his first doses of medication starts and it needs time to kick in. The physical help or emotional support I gave him was suffering/lacking and then his Parkinson's progressed further. More falls happened due to his progressing condition and very low BP, during that time he also had a heart attack and now he's quite frail. CKD has progressed significantly and he's undergoing further tests. If dad had been living with me I'm sure I would have been totally broken with all the caring. I felt pretty down as it was just going back and forth and am sure I had started sinking into depression but was still trying to remain strong. My sister had no understanding of my partners needs and so what little conversations we had in the last few months of dads life usually ended up with her being really nasty and vile to me. My dad passed 19 months ago and obviously I miss him. You may find you end up having to make choices later on if your dad moved in with you (should he be persuaded) that maybe you best make now and save yourself really, really hard times and accept there will be some heartache in your decision should you decide its best dad not move in.. How much time can you devote to both your son and dad will one of them fall short of the care that you obviously want to give to both of them what if you become unwell or one of them is unwell and needing more time?. Dementia never gets better only worse my dad changed so much in just a few short years think in total was around 5 years when we could see there was a problem until he passed but dementia can last many more years. My sister is my only sibling we no longer speak not that we were ever close anyway, I do hope you and your brother can discuss your dad and support each other,

 

[Valpiana]

Wandering,double incontinence, constant cycle of washing clothing and bedding ,lack of conversation,constant broken nights,flooded bathrooms and virtually
constant supervision of my husband that nearly tipped me over the edge. In the space of 4 months it turned from manageable to unbearable. However accepting that I needed to put my husband in a care home was heartbreaking but within a couple of days I knew it was the correct decision.

 

[MaNaAk]

I have been in your situation. My mom has lewy body dementia and just before Christmas she wandered out of her house in the middle of the night - I got a phone call from the police just before 1am. I then tried to juggle keeping her safe and keep my family going - I have two teenage boys one is still at school and has autism. I basically tried to sleep on her sofa at night and then take her home with me during the day - I lasted just over a week and although her GP, Mental Health and the Crisis team said they would come up with a solution and help her nothing materialised so in desperation I found a local care home that would take her on respite.

That week with her 24/7 was a total eye opener she was up all hours, she would be talking to 'someone' in her bedroom, she could hear noises, she heard my son crying outside and when I refused to let her go into the garden at 2am in the morning she went for me. When a Doctor came on the Monday she was in host mode and was almost triumphant when she answered all his questions. After he left the hostess mode vanished and the dementia reared its ugly head.

My mom is still in the care home and although heart tells me to let her come and live with us I know it would not work. We would have to convert our garage which would mean she was downstairs during the night whilst everyone else was upstairs and the last time she stayed at ours with what we thought was a water infection (it was dilerium) my son avoided coming home as 'it was different'. My mom was very controlling before dementia and as much as I would like to give her a chance I know it is the wrong decision.

I admire you if you do decide to try it for your dad and wish you all the luck in the world.

This is exactly what happened to me in 2017 and this turned out to be dad's last Xmas before going into the home. I had had weeks of broken sleep. When dad started to thrive in the home I realised that I had made the right and that I was still carer but an outside one.

MaNaAk

 

[Give me sunshine]

Hi all, this is my first post. My father has mixed dementia and lives alone with carers visiting him 3 times a day (which he hates). Recently the number of concerned phone calls from the carers and his neighbours has noticeably increased. A few nights ago he fell in his back garden whilst digging up the drain (!?!) my brother was alerted by a neighbour and went around and put him to bed. 40 mins later he was back out in the dark digging again. He's frail and falling approx. once a month and life is clearly becoming more confusing for him.

We have reached that dreaded stage where we don't think it's safe for him to live alone but he is adamant that he is coping and he doesn't want to leave his home. I would like him to move in with my family. We have a converted garage with ensuite and I have a disabled child so I've already rearranged my life to be a home a lot. He also noticeably relaxes when I visit him and take charge. But like I said he doesn't want to leave his house.
I have referred him for a care needs assessment and I plan to have a frank (but kind) talk with him about his options within the next few weeks (I live at the other end of the country) Does anyone have any advice or experience of dealing with this situation? It is weighing quite heavily on my shoulders.

I'm so sorry to hear about your dad. Could you try live-in care in the first instance? My dad had1.5 extremely happy years in his own home with the most wonderful carer looking after him and it was a really wonderful time for everyone involved - even the carer, who became part of the family and enabled him to feel like he still had some independence. My dad is now in a nursing home as keeping him at home for any longer would've required at least three carers, a cleaner plus some serious modifications to his home, but for a while being at home with full time support worked well.

 

[Violet Jane]

Live-in care is not suitable for everyone. Wandering at night, getting up repeatedly at night or not going to bed at a reasonable hour are not covered by standard live-care packages. A 'waking night' carer would need to be engaged / employed as well, which would make the care extremely expensive and much more expensive than a care home. I think that live-in care is only suitable in the early stages of dementia and where the PWD's behaviour is not challenging.

Live-in carers can't deal with any problems in the house and so a family member really needs to be available and on hand to deal with things breaking down, needing to be replaced etc. A live-in carer can let a tradesman in or accept a delivery but that's all.

 

[Give me sunshine]

Live-in care is not suitable for everyone. Wandering at night, getting up repeatedly at night or not going to bed at a reasonable hour are not covered by standard live-care packages. A 'waking night' carer would need to be engaged / employed as well, which would make the care extremely expensive and much more expensive than a care home. I think that live-in care is only suitable in the early stages of dementia and where the PWD's behaviour is not challenging.

Live-in carers can't deal with any problems in the house and so a family member really needs to be available and on hand to deal with things breaking down, needing to be replaced etc. A live-in carer can let a tradesman in or accept a delivery but that's all.

You're absolutely right. There comes a point where a care home is the only option. I guess i was thinking about the time when things were manageable with a live in carer- plus we were very lucky with the carer we had. But when behaviour became challenging and the night wandering began, live in care was impossible for all the reasons you give.