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Advice on Dad's safety whilst walking and Mum not taking an active role

Double Bagel

New member
Oct 27, 2020
4
Hi all,

This is the first time I'm posting here and am really hopeful there are others who have advice or pointers on what could happen next. When I say ‘we’ below I’m referring to our family who are all concerned about this. Thanks in advance.

Background
My Dad is in his late 70s and got diagnosed with mixed dementia (vascular and Alzheimer's) in 2016. He lives at home with my Mum. He is mostly physically fit and healthy, loves to walk around the neighbourhood and regularly travels to neighbouring towns on local buses.
He is able to prepare simple meals on his own and can wash himself though his hygiene has declined and he doesn't regularly shower currently.
Since his diagnosis, my Mum has not been the most receptive to my Dad's dementia and has swung between being dismissive of it to trying to cover it up to denying it to being unsympathetic towards him. She very much lives her own life, has friends of her own and they have grown apart. When suggestions of taking my Dad to hospital appointments or pre-COVID community Dementia group events, my Mum has refused and does not want the responsibility of caring for my Dad.

Recent developments
My Dad loves to walk and ends up going out about 3-4 times a day, mostly on his own. My Mum is unfortunately often unwilling to go with him. We have a GPS tracker which my Mum charges so we know where he is. My Dad is very sociable when out on these walks and often approaches strangers and in particular children. A few incidents recently were misinterpreted by people including one where people thought Dad was attempting to abduct children. Add in COVID and people are very nervous about an old man approaching children which is totally understandable. One incident ended up with Dad being arrested and then later released. The police are now aware of his dementia and have been understanding. We've also given my Dad a health tag which explains he has dementia and contact number for my Mum in case of emergency.

Current problems
The two main problems we're encountering are my Mum's approach and my Dad's walking. We've repeatedly tried to speak to my Mum about her role to look after Dad but this has fallen on deaf ears and she does not want to do any more than the bare minimum. On my Dad's walking, we have the GPS tracker and health tag but with the regularity of his walks and the way he approaches strangers, we are very worried there could be more incidents with people and/or the police.

I wonder if people have any ideas as to how to approach these situations.

1. What ideas do people have as to how to get our Mum on board? Has anything worked with others on the forum to persuade a partner to take a more active role?
2. What could we do with my Dad given he wants to walk a lot but ends up approaching strangers whilst out on these walks? We are really worried he will get into more trouble very soon but have no idea how we can stop him from going out.
3. Would also be interested in hearing from anyone who has gone down the route of a care home due to them not being able to keep their family member safe. How did that go?

Thanks very much
 

Woo2

Registered User
Apr 30, 2019
2,975
South East
Hi @Double Bagel , welcome to Tp , I haven’t been n your situation so can’t give you any advice really , hopefully others will be along soon . The only thing I would suggest is perhaps trying to find a walking companion for your dad . As regards to your mum I don’t know how you would get her to do more if she doesn’t want to . Maybe you could print off a really super piece called compassionate communication which might help her , unfortunately I don’t know how to add it so hoping someone clever can . Take care and keep posting , let us know how you get on.
 

Helly68

Registered User
Mar 12, 2018
749
@Double Bagel - I have not had the same situation, but similar. My parents had never got on very well, and when my mother got Mixed Dementia, this was never going to improve anything.
My father never wanted to be a carer (to be fair, few of us do) and made this very clear. They lived together for a few years, with increasing stress for both of them, until we arranged for Mummy to live permanently in a care home.
I understand this is not an option for everyone. However, the trigger for this was her going off for walks on her own and trying to interact with people in a way that could be misunderstood.
I think the only option you have here is for the PWD to be accompanied. I think in some areas Carers Centres have "befrienders" who can do this sort of thing. My father needed a break and would not have had the time or patience to accompany her.
Once in a care home, Mummy was much more settled and happy, until the eventual dementia progression. I understand that is is very hard to consider care homes in the current COVID situation but I am afraid that wandering is a very difficult behaviour to deal with.
 

lemonbalm

Registered User
May 21, 2018
866
Hello @Double Bagel . The suggestion of a walking companion is a good one if this can be achieved. Three or four trips out a day might be tricky but worth looking into I think. It would be a good and gentle way of introducing the idea of outside help, which could be increased as time goes on.

I worry that your Dad would become very frustrated in a care home environment at present as it is unlikely he would be able to go out several times a day with a carer and it sounds as though he is managing at home pretty well otherwise.
 

Jaded'n'faded

Registered User
Jan 23, 2019
1,009
High Peak
Just wanting to be devil's advocate here...

Your mum's life counts too and she is entitled to pursue her own happiness if she wishes. Not everyone is cut out for caring and your mum seems to have decided she is not.

From what you've said, your dad seems to be coping with most things at the moment but his wandering is the main worry. Have you talked to your mum about having carers in to look after your dad or keep him company on walks? Would he be self-funding? If so, you could just go ahead and contact care agencies and support groups to find a suitable companion.

And don't forget, there's a lot you don't see. Your mum is with your dad 24/7 and although you say she does nothing for him, I bet she does. She also has to live with someone who is deteriorating every day which must be heartbreaking and possibly terrifying for her.

You asked what you and the rest of the family can do. My suggestion would be to help your MUM out and give her some proper breaks, take dad off her hands for the day/weekend or go walking with him rather than expecting your mum to do it.
 

Duggies-girl

Registered User
Sep 6, 2017
2,140
Hi @Double Bagel I agree with @lemonbalm that your dad is probably not ready for a care home yet but it may not be too far away. The walking is the problem and a walking companion may be the best answer but probably expensive.

As for your mum, it is her choice, she probably has her own reasons why she does not want to be a carer or maybe she knows she is just not cut out for it. It is a big thing to face and come to terms with and it doesn't make her a bad person.
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,945
Nottinghamshire
Welcome from me too @Double Bagel

I’m going to suggest you come at this problem from a different angle and, instead of looking at your dad’s needs, look at what your mum needs to be able to manage the situation she is in. If you put yourselves in her shoes and try to imagine how it would feel to be expected to give up your life to caring for someone without a break you may be able to come up with a plan to help your mum put appropriate support in place for your dad.

Sadly someone as young and fit as your dad with dementia as advance as your dad’s seems to be is very difficult to manage, as is the wandering, and your mum is probably already exhausted by having to manage the whole household by herself and, as your dad’s hygiene is already starting to slip, I suspect it won’t be long before professional care, or even a carehome, is needed.

@Woo2 mentioned compassionate communication. Here is a link to the article which will, hopefully, give your mum some tools to help manage the situation. To be honest I think she probably needs help although she may not want to admit it - even to herself.

 

Rosettastone57

Registered User
Oct 27, 2016
1,399
Unfortunately your mum can't be made to do anything. You may think morally she should be more involved, but legally she doesn't have to do a thing. As others have said , a care agency will provide a sitting or a walking service. My mother in law before she became immobile had private carers who accompanied her out to shops, parks etc. If he is self funding this could be sorted out quickly but if your father is going to be reliant on social services, then I'm not sure they will pay out for that sort of service. I think your father will inevitably need a care home, once walking becomes wandering and getting lost, putting himself in danger , he will need 24/7 supervision
 

lollyc

Registered User
Sep 9, 2020
71
Just wanting to be devil's advocate here...

Your mum's life counts too and she is entitled to pursue her own happiness if she wishes. Not everyone is cut out for caring and your mum seems to have decided she is not.

From what you've said, your dad seems to be coping with most things at the moment but his wandering is the main worry. Have you talked to your mum about having carers in to look after your dad or keep him company on walks? Would he be self-funding? If so, you could just go ahead and contact care agencies and support groups to find a suitable companion.

And don't forget, there's a lot you don't see. Your mum is with your dad 24/7 and although you say she does nothing for him, I bet she does. She also has to live with someone who is deteriorating every day which must be heartbreaking and possibly terrifying for her.

You asked what you and the rest of the family can do. My suggestion would be to help your MUM out and give her some proper breaks, take dad off her hands for the day/weekend or go walking with him rather than expecting your mum to do it.
I have to agree, dealing with someone 24/7 can really take it's toll. Your mum is probably heartily fed up with the situation and is glad for dad to go off for a few hours. Look at it from her point of view, this is probably the only break she gets. As for not wanting to go to Dementia groups, I'm afraid I'm with her on that one - the last thing I want to do is spend time with a group of people with dementia - one is more than enough for me, thanks! What would be more useful is groups he can attend on his own, so that mum can have me time. (I appreciate that's not easy at the moment.)
In our area we have a company that provides "Personal Assistants" - someone who could walk with your dad, and has the same interests. You would have to pay for this. Age UK also offers this in our area, but I'm not sure that they provide this countrywide.
 

Double Bagel

New member
Oct 27, 2020
4
Hi again,

First of all a huge thank you for all of your thoughtful comments and kind thoughts. I did see my Mum and Dad yesterday and just wanted to reply below. Apologies if I've missed any points but I really do appreciate it. Keep any other thoughts coming! Hope you're all well.

Update from yesterday: Another issue at the moment is that my Dad is continuing to make local bus trips in the local area despite COVID restrictions in place meaning only essential travel is advised. Clearly my Dad is not able to remember the rules and reasons for them and our Mum is finding it hard to stop him going out so he has continued through this period which is obviously not ideal.

@Woo2 thanks very much for the welcome and the idea of the walking companion. We are already exploring this through a local care agency and are hoping to have something in place soon. However my Mum is not that keen on the idea and thinks my Dad doesn't want/need companionship outside of the home. We thought the police incidents would make it clear that Dad requires help but my Mum is very reluctant to arrange anything. We've asked Mum what we can do to help and offered to arrange the care agencies ourselves but our Mum says we are interfering so it's hard to keep pushing her. We're aiming to trial some of these services with a view to ramping them up later so am very keen to at least get something off the ground now and get my Dad used to something.

@Helly68 we are also thinking longer term around a care home but as you say, it may be just a little too soon yet. We're starting to explore this option but given my Dad and Mum are coping well apart from the walking, this may be a little down the line. It does sound like the trigger for you to arrange the care home for your Mum was the walking too. Could you give any more information about what made you make that decision and what the walking situation was with your Mum? We're not sure at what stage we might take the next steps on this ourselves.

@lemonbalm yes I agree with you, it may be too soon yet for the care home. Thanks for suggestion of walking companion.

@Jaded'n'faded thanks for your perspective on thinking of things from my Mum's side. It may have sounded like we were just thinking of our Dad but we know that our Mum is really struggling to cope and we are making efforts to ensure she has her freedom and own life as much as she can. On your questions, yes we are self-funded and are looking at a few local agencies who could provide walking companionship for my Dad and take the pressure off my Mum.

@Duggies-girl thanks for your comments, agree on it being too soon now but wonder how we might decide when is the right time to look at care homes.

@Bunpoots thanks for the reply. That link really is a great read and has given us a few angles to help both my Mum and Dad.

@Rosettastone57 yes I can see that there isn't a legal obligation and this is a really hard situation for all involved. We;ll hopefully be able to make it work out for both my Mum and Dad.

@lollyc yes absolutely, my Mum is really struggling too. However we are trying to help her now and in the future by arranging care agencies, support, walks etc. but for whatever she continues to be resistant of this even if it will allow her more freedom and possible trips away on her own without my Dad (which she has said is her preference). One other point we think is that my Mum is incredibly tight when it comes to money so even when we have offered to pay for services, she still refuses. We are really struggling to work out how to convince her to start some of these services which will benefit my Dad and give her the time on her own she clearly needs. On the dementia groups we were certainly not suggesting she attend them as well but that she could drop my Dad off and pick him up. She didn't want to do this and my Dad therefore couldn't go.
 

lollyc

Registered User
Sep 9, 2020
71
Sorry - I misunderstood the situation, and your Mum is clearly not helping matters!
To a certain extent I can understand the resentment at spending the money - everything with dementia costs, but if you have cancer you seem to get much more support. At least that's my experience. But the fact that you are offering to pay makes it seem that the cost isn't the root of the problem.
(Incidentally, does your Dad get Attendance Allowance? This could be used to pay for someone to walk with him, or maybe get him to & from the dementia group.)
Will your Mum discuss what she actually does want, if she won't go with your suggestions? Clearly, doing nothing is simply not an option. How does she see things panning out, if she continues to be resistant? Perhaps she thinks that something will happen that will result in your Dad being "taken away" and it will no longer be her problem?
Sadly, as others have said, she can't be forced into doing anything, however much you may feel she is morally obliged to do it.
 

Helly68

Registered User
Mar 12, 2018
749
@Double Bagel - just responding about my Mum and the issues that led us to move her to a care home.
In terms of going out, Mummy had started to leave the house, sometimes innapropriately dressed, in the day and once at night. She knew she had a doctors appointment but had no idea if it was day or night. She was, at that point not always safe out on her own and short of my father locking her in, it was hard to know how to deal with this. She would talk to anyone and everyone and frequently lost items - keys, bus pass bank cards. The not being able to keep her safe aspect was one of the things that led us to consider a care home.
Later Mummy also started to fall over whilst out, which was another trigger.

The other issue was the effect that caring for her was having on my father. He was incredibly stressed and angry about the situation and they argued a lot. He was under a lot of pressure, as are most carers, and so we started with Mummy going for "day care" at a local care home for a few days a week, she then transferred there as a permanent resident to make the process of transition a bit easier. Sadly it would be impossible to do that at the moment.

Our experience was that Mummy was much happier in an environment where less was expected of her. My father was able to start to get his life back. We started the transition to care home fairly early so that it was not too sudden and in order that Mummy could get to know people whilst she still had some capacity.

These choices are very personal. It is not unusual for the PWD and partner to play down the effects of dementia, or deny it. I worked hard on my Dad to explore the care home option. We were lucky in that whilst she was initially a bit dubious, Mummy reacted well to going to the care home and settled in quickly. I know this is not always the case.
 

Double Bagel

New member
Oct 27, 2020
4
Sorry - I misunderstood the situation, and your Mum is clearly not helping matters!
To a certain extent I can understand the resentment at spending the money - everything with dementia costs, but if you have cancer you seem to get much more support. At least that's my experience. But the fact that you are offering to pay makes it seem that the cost isn't the root of the problem.
(Incidentally, does your Dad get Attendance Allowance? This could be used to pay for someone to walk with him, or maybe get him to & from the dementia group.)
Will your Mum discuss what she actually does want, if she won't go with your suggestions? Clearly, doing nothing is simply not an option. How does she see things panning out, if she continues to be resistant? Perhaps she thinks that something will happen that will result in your Dad being "taken away" and it will no longer be her problem?
Sadly, as others have said, she can't be forced into doing anything, however much you may feel she is morally obliged to do it.
Hi again @lollyc we are currently applying for the Attendance Allowance and plan to put this to very good use with walking companions. Agree with your questions, it would help immensely if we were able to get my Mum to help us understand things from her perspective. Generally her approach is to brush things under the carpet, divert our attention and hope we don't ask about it again! I'm keeping a log of things we discuss as otherwise we begin to forget about decisions we've taken and what people said they will do. Thanks for the support.
 

Double Bagel

New member
Oct 27, 2020
4
@Double Bagel - just responding about my Mum and the issues that led us to move her to a care home.
In terms of going out, Mummy had started to leave the house, sometimes innapropriately dressed, in the day and once at night. She knew she had a doctors appointment but had no idea if it was day or night. She was, at that point not always safe out on her own and short of my father locking her in, it was hard to know how to deal with this. She would talk to anyone and everyone and frequently lost items - keys, bus pass bank cards. The not being able to keep her safe aspect was one of the things that led us to consider a care home.
Later Mummy also started to fall over whilst out, which was another trigger.

The other issue was the effect that caring for her was having on my father. He was incredibly stressed and angry about the situation and they argued a lot. He was under a lot of pressure, as are most carers, and so we started with Mummy going for "day care" at a local care home for a few days a week, she then transferred there as a permanent resident to make the process of transition a bit easier. Sadly it would be impossible to do that at the moment.

Our experience was that Mummy was much happier in an environment where less was expected of her. My father was able to start to get his life back. We started the transition to care home fairly early so that it was not too sudden and in order that Mummy could get to know people whilst she still had some capacity.

These choices are very personal. It is not unusual for the PWD and partner to play down the effects of dementia, or deny it. I worked hard on my Dad to explore the care home option. We were lucky in that whilst she was initially a bit dubious, Mummy reacted well to going to the care home and settled in quickly. I know this is not always the case.
Hi @Helly68 thanks for explaining your situation more. It sounds like the period of transition from day care to then longer term care worked well for your family and this is something we may well do too. I'm glad your Mummy is happier where she is and this allowed your Dad also to get his life back. Hope things are still going OK for you all.
 

Fourwoodys

New member
Nov 4, 2019
1
Hello, I have not posted on this forum before. I just wanted to say that I understand the worries as my dad also walks a lot - up to 3 or 4 times per day. He also speaks to strangers and tries to tell them the same joke. He is very unsteady on his feet - I walked with him today and several times he almost tripped and fell.
I would be interested to read other replies.
May I ask what GPS tracker you have?
Thankyou.
 
Last edited:

Bunpoots

Volunteer Host
Apr 1, 2016
4,945
Nottinghamshire
Hi @Fourwoodys welcome to Dementia Talking Point.

If you put “GPS trackers” in the search box at the top of the page you’ll find some info as I know this subject has come up before. I’m sorry I have no personal experience of using them as my dad wasn’t a wanderer.

I’ve also heard of people using mobile phones as trackers for PWD who habitually carry them.
 

silkiest

Registered User
Feb 9, 2017
171
Hi @Double Bagel, we had he same problem with MIL going on the buses. she is in the highest risk category due to other health problems. We discussed this with the local Admiral Nurse who said if it was her mother she would be taking way her bus pass. Believe it or not this has worked, MIL has always been careful with money and will not pay for a bus trip so now she just walks to the smaller local shops.
 

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