How to keep your home homely after a dementia diagnosis

[sarahgreg]

Hello,

My name is Sarah and I'm from Alzheimer's Society's corporate partnerships team. I'm working on an application with a company that has an interest in housing and I want to know public opinion on:

- Why it is important for people to stay at home for as long as possible after a dementia diagnosis?
- How to keep your home feeling homely after adapting it to help with your dementia or maybe if you have had to move to a different more accessible home?
- What are your favourite memories from your home?
- Does anyone have any favourite items in their home that makes their home homely?

This thread is for anyone affected by dementia to share their thoughts and feelings - carers, friends and family, and those living with dementia.

Thank you!

 

[TamsinT]

This member has permission to post about their work.

 

[Knitandpurl]

In our home my husband (5 years from diagnosis of PCA ) can still mostly find his way around, shower and dress with minimal help/checking, And go to the toilet on his own (again with minimal post visit check). He can also still visit our local shop in his own (the staff help him), and go for ‘his’ walk in the village. He can’t do any of these things elsewhere, even places like our children’s homes that he used to know well.

 

[sarahgreg]

In our home my husband (5 years from diagnosis of PCA ) can still mostly find his way around, shower and dress with minimal help/checking, And go to the toilet on his own (again with minimal post visit check). He can also still visit our local shop in his own (the staff help him), and go for ‘his’ walk in the village. He can’t do any of these things elsewhere, even places like our children’s homes that he used to know well.

Thank you for sharing your story! It really shows just how special your home is for your husband to feel safe and comfortable. It sounds like you're doing an amazing job supporting him.

 

[canary]

Im not altogether sure what is meant by "homely". If you mean that it is non-minimalist, "lived-in" and rather messy, then I think my home ticks all those boxes.

TBH, I cant be bothered with how my home "feels" - I have enough problems making sure that we both eat, have dry clean clothes to wear and OH takes his medication. I dont sweat the small stuff! The only way my home is halfway decent is because I have a home help who comes once a week to help me with the housework and keep it (mostly) clean.

Although I keep all his catheter gubbins in a drawer and his drugs/medical do-dats in a cupboard, there is no disguising the frame by his sofa, the rollator in the corner, elephants feet under the sofa and chair legs, bath board in the bathroom, ramp and various grab rails around the house (although one of the grab rails in the bathroom doubles up as a towel rail. Does that count as disguising it?). Today there is also a wet sheet hanging up on the curtain rail and a kylie draped over the airer. I honestly dont think OH notices

 

[Lawson58]

We have lived in the same house for about 15 years so my husband is very familiar with it. He has a ‘study‘ so that he could continue to play bridge and it is really in a mess. He takes up cups of tea that he dribbles down the cupboard doors and on the carpet and has bit of paper lying around with his scribbles that I don’t understand. The rest of the house would be in the same state if I did not pick up the empty plates and cups after him and clean bench tops and cupboard doors. He opens doors with food on his hands which makes them all sticky.

I could go on and on but I won’t as I am sure you get the picture. Homeliness doesn’t enter into his understanding of anything much these days. As long as he has food, a place to sleep and a room to play his precious bridge, he couldn’t care less. At least I can shut the door on his mess.

 

[Jessbow]

Why it is important for people to stay at home for as long as possible after a dementia diagnosis?

is it? No one should ever feel bad about their loved one going into care, be it 12 months, or 12 years after diagnosis.

A kylie on the sofa looks like a kylie, covering it with a throw defeats the object.

 

[nitram]

I'm working on an application with a company that has an interest in housing and I want to know public opinion

You have had comments from members living with dementia.

If the company's housing interest extends to design, maybe new build, browsing around this site could be useful.

 

[sarahgreg]

Im not altogether sure what is meant by "homely". If you mean that it is non-minimalist, "lived-in" and rather messy, then I think my home ticks all those boxes.

TBH, I cant be bothered with how my home "feels" - I have enough problems making sure that we both eat, have dry clean clothes to wear and OH takes his medication. I dont sweat the small stuff! The only way my home is halfway decent is because I have a home help who comes once a week to help me with the housework and keep it (mostly) clean.

Although I keep all his catheter gubbins in a drawer and his drugs/medical do-dats in a cupboard, there is no disguising the frame by his sofa, the rollator in the corner, elephants feet under the sofa and chair legs, bath board in the bathroom, ramp and various grab rails around the house (although one of the grab rails in the bathroom doubles up as a towel rail. Does that count as disguising it?). Today there is also a wet sheet hanging up on the curtain rail and a kylie draped over the airer. I honestly dont think OH notices

Hello, thank you for sharing your story!

My homely home is definitely 'lived-in' too! Whenever I head back to my parents, there's always mess and dog toys all around the house. But for me, seeing my dads old fireman collectibles in the cabinet and some of my mums old paintings on the wall are the things that make me feel at home.

There is still so much work to be done to support people adapting their home after a diagnosis, it's useful to hear all of the add-ons you've had in your home, even if they end up as towel holders!

 

[sarahgreg]

We have lived in the same house for about 15 years so my husband is very familiar with it. He has a ‘study‘ so that he could continue to play bridge and it is really in a mess. He takes up cups of tea that he dribbles down the cupboard doors and on the carpet and has bit of paper lying around with his scribbles that I don’t understand. The rest of the house would be in the same state if I did not pick up the empty plates and cups after him and clean bench tops and cupboard doors. He opens doors with food on his hands which makes them all sticky.

I could go on and on but I won’t as I am sure you get the picture. Homeliness doesn’t enter into his understanding of anything much these days. As long as he has food, a place to sleep and a room to play his precious bridge, he couldn’t care less. At least I can shut the door on his mess.

Hello, thank you for sharing! You're doing an amazing job looking after him.

 

[sarahgreg]

Why it is important for people to stay at home for as long as possible after a dementia diagnosis?

is it? No one should ever feel bad about their loved one going into care, be it 12 months, or 12 years after diagnosis.

A kylie on the sofa looks like a kylie, covering it with a throw defeats the object.

Hello, thank you for the challenge, you are absolutely right! My grandma had dementia and her being home for as long as she was nearly killed my grandad. But even in her care home, we tried to keep it 'homely' with a few of her nik-naks and some art. Not that she would have noticed, but it made a difference when we visited.

 

[Knitandpurl]

Mmmm. Think you are probably right- in the end the ‘homeliness’ is almost certainly more important to the friends and family than the person with the dementia. In the end, even the ‘activities’, they don’t recognise the people in the photographs, the ornaments ie the pictures on the wall. I don’t think my Mum could even make ‘sense’ if photographs in her last year. My husband can’t now, but then the dementia has attacked his sight very badly so he is not ‘typical’ in that respect. Strangely enough my Mum enjoyed a game of scrabble right up to the last week of her life, but she took no interest in any of her ‘familiar’ much loved ornaments, photos and pictures.

 

[Tomsamsmum]

Even though my mums house has practically stayed the same for the 12 yrs except now a hospital bed , she still says take me home ?.? And whose house is this even with family photos on the wall, mum has now quite advanced VD we lost dad in July with mixed dementia, mum is not even aware 😢

 

[canary]

Even though my mums house has practically stayed the same for the 12 yrs except now a hospital bed , she still says take me home ?.? And whose house is this even with family photos on the wall

Is she thinking of a childhood home?

 

[sarahgreg]

Mmmm. Think you are probably right- in the end the ‘homeliness’ is almost certainly more important to the friends and family than the person with the dementia. In the end, even the ‘activities’, they don’t recognise the people in the photographs, the ornaments ie the pictures on the wall. I don’t think my Mum could even make ‘sense’ if photographs in her last year. My husband can’t now, but then the dementia has attacked his sight very badly so he is not ‘typical’ in that respect. Strangely enough my Mum enjoyed a game of scrabble right up to the last week of her life, but she took no interest in any of her ‘familiar’ much loved ornaments, photos and pictures.

It's crazy how a familiar game like scrabble can put people at such peace. Thank you so much for sharing your story, pushing the carers perspectives and thoughts and feelings is just as important making the home feel homely when caring for a loved one.

 

[sarahgreg]

Even though my mums house has practically stayed the same for the 12 yrs except now a hospital bed , she still says take me home ?.? And whose house is this even with family photos on the wall, mum has now quite advanced VD we lost dad in July with mixed dementia, mum is not even aware 😢

I'm so sorry to hear! I hope you are taking care of yourself and keeping your treasured homely items close to you that remind you of your good memories with your mum and dad.