Social Services don't want MIL to go out!

[Lavender45]

My mum is probably further along the dementia journey than your mum in law Lizandnigel. For a while she was ok going shopping and coming home, then she needed me to shop with her to stop her buying the same items day after day, then one day whilst out with me she just stepped out onto a main road (3 very busy lanes each way) into oncoming traffic which had to slow down. I had to drag her back to the side. I was very lucky mum wasn't injured or killed and that she didn't cause a major accident.

I was stunned by what happened, but mum was blithely unaware of the consequences of her actions. I admit words were exchanged even though I know that to be pointless. Mum actually argued that the traffic could and should just stop for her showing no understanding whatsoever and yet had you asked me just before this happened was mum road aware I would have said yes. Things seem to change so fast with dementia.

My mum was what we term a wanderer. She had always been very independent and had walked a lot, but her new purpose in walking became a burning need to see her mum and sometimes her dad. By this time I was with mum 24/7, but there was nothing I could do to dissuade her from going out multiple times a day, even when exhausted the need to go was greater than the need to rest and ignored her exhaustion and pain from her arthritis. At times she was staggering down the road and looked like she was drunk. She wasn't, mum was essentially teatotal and not a drop had crossed her lips, she was just in pain and plain worn out. I swear it was the hardest time I've ever lived through. I was so stressed and mum was so distressed because she wasn't with her mum and dad.

I will admit that I gambled on mum's safety even after the incident I've told you about. Mum wouldn't accept me with her when she went out to find her parents, she was aggressive and could be violent, the most I could do was follow and pray I could get her home again safe. I'm not saying that your mum in law has or would ever show aggression, every PWD is an individual and reacts to their illness and their surroundings in different ways, but you truly never know what will happen and I know it sounds trite, but that's dementia for you.

I appreciate you know your mum in law better than anyone and are in some ways best placed to assess the risks, but so many of us have walked in similar shoes to yours and have had to accept that things have become unsafe in a short space of time.

Just as an aside as I've harped on at you enough my mum is now in a nursing home. Mum would never have wanted to be in care and indeed tried to make me promise never to give up on her and never to put her in a home as she put it. I never ever made that promise. I promised to always do my best and what I thought was best for her. I know mum is best in a secure environment now. I feel some guilt some times that I couldn't manage at home any further than I did, but I know I've done and continue to do my very best for her. I never thought mum would need to go into care, as I said before you just never know what will happen. If the time comes when your mum in law needs a secure environment like me you will be doing your best for her at that time. In my eyes it has to be enough. I do I how tough this is for you now I hope you will find a solution which gives you peace of mind both that your mum in law is safe and able to enjoy the outdoors as she always has.

 

[love.dad.but..]

My mum is probably further along the dementia journey than your mum Lizandnigel. For a while she was ok going shopping and coming home, then she needed me to shop with her to stop her buying the same items day after day, then one day whilst out with me she just stepped out onto a main road (3 very busy lanes each way) into oncoming traffic which had to slow down. I had to drag her back to the side. I was very lucky mum wasn't injured or killed and that she didn't cause a major accident.

I was stunned by what happened, but mum was blithely unaware of the consequences of her actions. I admit words were exchanged even though I know that to be pointless. Mum actually argued that the traffic could and should just stop for her showing no understanding whatsoever and yet had you asked me just before this happened was mum road aware I would have said yes. Things seem to change so fast with dementia.

My mum was what we term a wanderer. She had always been very independent and had walked a lot, but her new purpose in walking became a burning need to see her mum and sometimes her dad. By this time I was with mum 24/7, but there was nothing I could do to dissuade her from going out multiple times a day, even when exhausted the need to go was greater than the need to rest and ignored her exhaustion and pain from her arthritis. At times she was staggering down the road and looked like she was drunk. She wasn't, mum was essentially teatotal and not a drop had crossed her lips, she was just in pain and plain worn out. I swear it was the hardest time I've ever lived through. I was so stressed and mum was so distressed because she wasn't with her mum and dad.

I will admit that I gambled on mum's safety even after the incident I've told you about. Mum wouldn't accept me with her when she went out to find her parents, she was aggressive and could be violent, the most I could do was follow and pray I could get her home again safe. I'm not saying that your mum has or would ever show aggression, every PWD is an individual and reacts to their illness and their surroundings in different ways, but you truly never know what will happen and I know it sounds trite, but that's dementia for you.

I appreciate you know your mum better than anyone and are in some ways best placed to assess the risks, but so many of us have walked in similar shoes to yours and have had to accept that things have become unsafe in a short space of time.

Just as an aside as I've harped on at you enough my mum is now in a nursing home. Mum would never have wanted to be in care and indeed tried to make me promise never to give up on her and never to put her in a home as she put it. I never ever made that promise. I promised to always do my best and what I thought was best for her. I know mum is best in a secure environment now. I feel some guilt some times that I couldn't manage at home any further than I did, but I know I've done and continue to do my very best for her. I never thought mum would need to go into care, as I said before you just never know what will happen. If the time comes when your mum needs a secure environment like me you will be doing your best for her at that time. In my eyes it has to be enough. I do I how tough this is for you now I hope you will find a solution which gives you peace of mind both that your mum is safe and able to enjoy the outdoors as she always has.

Fortunately I didn't have an incident with dad like yours lavender45 but you have perfectly summed up how it was for me with dad and oh so many similarities in the long time looking after dad in his home that eventually led to a care home. The all consuming need for dad to try to achieve his aim of finding his mother was sad, distressing for us both and worrying trying to keep him safe all the time meant I never left him on his own. His determination was matched by despair for him and me and yes during daylight hours I walked with him but it was never enough to ease the need to find his mother.once out he would often forget why he was out but back indoors the need soon returned. I always felt dads compulsion to night time pace and wander would not leave him until he was physically unable to walk and that proved to be at end of life.

I don't know what the answer is for LizandNigel..you know mil and her stage best but I think we are all just trying to say from our experience things can change from being predictable overnight and where there were limited risks the increased risks suddenly make the pwd vulnerable.

 

[Lorna44]

I agree with all the other posters..... I thought my mum was safe at home & didn't wander. She also has Parkinson's and her mobility is terrible, it was only after a crisis hit, (mum calling the police, falling all the time & a sudden decline in symptoms) that it came to light that Mum was wandering of a night in her nightie and neighbours found her freezing cold & extremely confused outside. They took her home & settled her but never told us, cos mum told them not to and also they didn't want to worry us. Mum is now in a nursing home & safe and we feel so much relief that nothing happened to her... but it could of, not everyone is nice & caring, not everyone will make sure someone is safe. It only takes one person to cause pain. Hugs & best wishes to you

 

[JMS1824]

I really sympathize with the OP and PWD because I know how I'd feel if I couldn't go for a walk when I needed to, but there's a break point in dementia progression when the PWD's care needs exceed the family's capacity and it sounds like you're approaching it. Mum went fairly quickly from being able to walk around by herself to getting lost and distressed to leaving the house in inadequate clothing and taking up hours of police time. The police ordered Dad to lock the doors, whereupon Mum went ballistic and ended up in a locked ward with a DOL. She then went into a care home--in the first one she walked constantly, but in the second much nicer one I've noticed she seems to be losing interest in walking (perhaps because she likes her beautiful room, perhaps the natural progression of dementia).

Every single PWD I've known (and a lot of my friends and family have had to cope with this situation) has, in the end, had to go into a care home because right now it's the best level of care for dementia. You have to be a very wealthy organizational genius to DIY late-stage dementia care, from what I've seen. Facing reality and planning that move well ahead of the crisis that's coming will save you the distress and heartache we've all been through these last 18 months. You've got all my sympathy but the police and social care involvement says to me that the crisis point is coming.