Joined today

[morning runner]

My mom was diagnosed with mixed dementia (Alzheimer’s and vascular) almost 2 years ago. In June this year she started to disassociate the home she has lived in for over 60 years as being her home to the extent she started to phone us (my sister and I) at all hours of the day to help her, to go and pick her up to take her home and always when we went round to her house she had bags packed ready at the bottom of the stairs. It would take a lot of persuasion that she was in her own home.

Mom then began to leave the house (she is 88) and it is down to the fantastic neighbours where she lives who would phone us after they had taken her back home and would wait for a family member to arrive before they left. We had calls early morning (6.00 am) and late evening (10.00 pm) when Mom was found walking the streets or standing at a bus stop. At that time Mom had a dog who she did take with her on a lead, until the last couple of times when she was found with the dog not on a lead and did not understand why the dog was following her. At that point I had to take the dog to my home to look after.

During this time Mom was having carers 4 times a day, she would however often wait until they left and then go out. It got to the point where she was further assessed and I was told Mom needed 24 hour care, which triggered the discussions with Social Services.

Mom has been in a CH since July and we are looking to make this permanent and are in the process of having to sell Mom’s house (fortunately I have Enduring Power of Attorney for all financial matters which has now been registered with the Office of the Public Guardian) to pay for her care.

Mom asks us every day to take her home so she can be with her dog and cannot understand why she is where she is and what she has done wrong, it is heart-breaking. I cannot lie when she asks if the house is sold and we do our best to explain why. Social Services have also agreed Mom needs to be in long term care.

Apart from the wandering from her home, she will ask to speak to her sisters both of which have passed away, sometimes she will ask why Dad has not been to see her (he passed away 21 years ago) and occasions she will ask to speak to her own Mom.

I know in my heart of hearts that Mom needs to be in a safe and secure environment but my dilemma in all this is taking her away from a home of 60+ years and is this in her best interests. My sister and I both work full time and are not in a position to give up or even go part-time. Has anyone else experienced the disassociation with home as being home and if in a care home the constant request to be taken home and more importantly how do you respond to this?

 

[Amy in the US]

@morning runner, hello and welcome to Talking Point. I'm sorry to hear of the situation with your mother and that you had to find your way here. TP has been a great resource for me and we hope you'll feel welcome and find it helpful.

I'm not where I can write as complete a response as I'd like but didn't want to read and run.

First, there is a lot of good information on the U.K. Alzheimer's Society website and when you have time, I encourage you to read more about this wretched disease and the issues that go along with it. Similarly, you may find reading around on TP helpful.

Sadly, logic and dementia don't mix. You cannot reason with dementia and it's generally an exercise in frustration. As the disease damages the brain, the brain can no longer function normally. Asking a PWD (person with dementia) to do so is a bit like asking a person with a broken leg to walk on it. Of course everyone is different and function can fluctuate, but perhaps keep that in mind. I'll post some links to compassionate communication information when I have a chance, you may find it helpful.

I'm sorry to say that the "going home" syndrome is very common in PWDs. It is often part of sundowning (which can begin in the early to mid-afternoon). It is generally thought not to necessarily be an expression of wanting to go somewhere specific, although it can be, but more about wanting to be somewhere that feels safe and familiar. Yes, often people who are in their own home want to "go home."

You might try offering reassurance that she is somewhere safe and has a place to sleep (a frequent query).

Your mother may be anxious (also quite common with dementia) and needing 24/7 company for reassurance and safety.

One of the things I hate most about dementia is being forced to make choices to give the PWD what they need, not necessarily what they want, or say they want, or what I would prefer. Care needs drive decision making, is a quote I heard somewhere, but it is hard for carers and families.

Wandering is also common, but dangerous, and led to my mother having a crisis, going to hospital, being sectioned, and then placed in a care home. I do hear your concerns and am sorry you are in this situation.

You may need to just arrange for care, or make the move to a care home, and do it without her understanding and approval. She may not be able to make a rational and reasoned decision about what is best for both her immediate and long term safety and welfare.

I'm sorry if this is upsetting and that's not my intention, I assure you.

Best wishes to you and your family and I hope you can find a way forward.

 

[morning runner]

@morning runner, hello and welcome to Talking Point. I'm sorry to hear of the situation with your mother and that you had to find your way here. TP has been a great resource for me and we hope you'll feel welcome and find it helpful.

I'm not where I can write as complete a response as I'd like but didn't want to read and run.

First, there is a lot of good information on the U.K. Alzheimer's Society website and when you have time, I encourage you to read more about this wretched disease and the issues that go along with it. Similarly, you may find reading around on TP helpful.

Sadly, logic and dementia don't mix. You cannot reason with dementia and it's generally an exercise in frustration. As the disease damages the brain, the brain can no longer function normally. Asking a PWD (person with dementia) to do so is a bit like asking a person with a broken leg to walk on it. Of course everyone is different and function can fluctuate, but perhaps keep that in mind. I'll post some links to compassionate communication information when I have a chance, you may find it helpful.

I'm sorry to say that the "going home" syndrome is very common in PWDs. It is often part of sundowning (which can begin in the early to mid-afternoon). It is generally thought not to necessarily be an expression of wanting to go somewhere specific, although it can be, but more about wanting to be somewhere that feels safe and familiar. Yes, often people who are in their own home want to "go home."

You might try offering reassurance that she is somewhere safe and has a place to sleep (a frequent query).

Your mother may be anxious (also quite common with dementia) and needing 24/7 company for reassurance and safety.

One of the things I hate most about dementia is being forced to make choices to give the PWD what they need, not necessarily what they want, or say they want, or what I would prefer. Care needs drive decision making, is a quote I heard somewhere, but it is hard for carers and families.

Wandering is also common, but dangerous, and led to my mother having a crisis, going to hospital, being sectioned, and then placed in a care home. I do hear your concerns and am sorry you are in this situation.

You may need to just arrange for care, or make the move to a care home, and do it without her understanding and approval. She may not be able to make a rational and reasoned decision about what is best for both her immediate and long term safety and welfare.

I'm sorry if this is upsetting and that's not my intention, I assure you.

Best wishes to you and your family and I hope you can find a way forward.

 

[morning runner]

Thank you for responding having people to talk to who understand makes a huge difference and can be reassuring. You do feel very alone dealing with a loved one who has dementia so I am pleased to find this website. What you say makes sense and I appreciate this, thank you.

 

[LadyA]

Hello @morning runner and welcome.

It is heartbreaking to watch someone deteriorate. This theme of "take me home" is so common. I believe that the "home" the person is looking for is not so much a particular place, as a sort of feeling. A comfort. They know that something isn't right, and not being able to remember makes them feel very insecure. They long to go to where they know what's what, and where they will be taken care of. Basically, I think, they long for that period when we were children and believed our parents just took care of everything, and we had no worries! It's that feeling of comfort and security and "all's right with the world". "Home"

You say that you hate to lie to your mum about the house, but is it helping her any trying to tell her the truth? Could you even fudge a bit, and tell her there's "work being done" on it? Or simply that "The Doctor says" she needs to stay where she is, warm and safe, until she is stronger.

 

[morning runner]

Hello @morning runner and welcome.

It is heartbreaking to watch someone deteriorate. This theme of "take me home" is so common. I believe that the "home" the person is looking for is not so much a particular place, as a sort of feeling. A comfort. They know that something isn't right, and not being able to remember makes them feel very insecure. They long to go to where they know what's what, and where they will be taken care of. Basically, I think, they long for that period when we were children and believed our parents just took care of everything, and we had no worries! It's that feeling of comfort and security and "all's right with the world". "Home"

You say that you hate to lie to your mum about the house, but is it helping her any trying to tell her the truth? Could you even fudge a bit, and tell her there's "work being done" on it? Or simply that "The Doctor says" she needs to stay where she is, warm and safe, until she is stronger.

Thank you for taking the time to respond. I have taken a lot of comfort from your thoughts and just knowing the theme of take me home is so common really helps. I will take a different approach when mom talks about home and asks about it. I am so glad to have found this forum it helps so much to share with people who understand what the PWD is experiencing and also the relatives who do the best they can.

 

[maryjoan]

Thank you for responding having people to talk to who understand makes a huge difference and can be reassuring. You do feel very alone dealing with a loved one who has dementia so I am pleased to find this website. What you say makes sense and I appreciate this, thank you.

My partner has vascular dementia and complex medical needs - all come about in the last 10 months - I am his sole carer and had to give up my business to care for him with huge downturn in income. It is such a confusing situation for the carer - you see the person, but they are not the person.
My partner is just 71, so this could go on.......

You will find a lot of support on here and a lot of people to empathise with and those who have already gone through what you are experiencing.. use the site with the confidence that you can say things on here that you would not say to anyone else, and people will understand, and not judge.....

take care

 

[morning runner]

My partner has vascular dementia and complex medical needs - all come about in the last 10 months - I am his sole carer and had to give up my business to care for him with huge downturn in income. It is such a confusing situation for the carer - you see the person, but they are not the person.
My partner is just 71, so this could go on.......

You will find a lot of support on here and a lot of people to empathise with and those who have already gone through what you are experiencing.. use the site with the confidence that you can say things on here that you would not say to anyone else, and people will understand, and not judge.....

take care

Just wanted to say thank you and you take care too. I will be off to see mom later and will use the advice given over the last couple of days.

 

[morning runner]

My aunt went into a care home in May. I have LPA and have already sold her house. That sounds awful but it had to be done to pay her fees and so that I didn't have responsibility for it through the winter.
My aunt doesn't really remember where home is but occasionally says she wants to go there. She asks if it's okay. I just reassure her that the house is fine and the police are keeping an eye on it. (At other times she thinks my late uncle is still there, living it up with his 2 girlfriends!)
Logic doesn't come into it and white lies are what is needed. She only once
asked the CH manager to phone a taxi for her. The manager said 'Well today is Friday and I don't think I'll be able to get a taxi at the weekend. Shall we do it on Monday?" That satisfied her. By Monday, of course, it was all forgotten.

I like the idea of the police are keeping an eye on the house, will try that next time she asks. Really appreciate you taking the time to respond me and for want of repeating myself it is very comforting to know you are not alone dealing with this dreadful illness. I will see how she when I visit after work this evening.