Support at home vs Extra care housing for mum. Any advice appreciated.

[DollyO]

Hello everyone.

Hmmm, not really sure where to start, have had the worst few weeks of my life and really looking for some advice. To put it briefly, my mum has had concerns about having early dementia for about a year now and was having this investigated by her gp. About 3 weeks ago my dad, who was my mum's (72) carer as she is disabled due to a serious chest condition, was diagnosed with a terminal brain tumour ( strangely i thought he actually had frontotemporal dementia as his symptoms pointed to this, infact it was a very aggressive tumour pressing on this oart of his brain). Since then, our whole world has been turned upside down. I have had to spend my time split between visiting my dad in hospital/nursing home and trying to sort out meals on wheels, telecare alarms, etc for mum. Battled with social services to get any kind of support for mum, they eventually agreed to send someone round every evening for a temporary period to help her have a bath.

Im pretty sure that since dad's diagnosis, my mum's memory problems have accelerated to the point now where she never knows what day it is, what time of day it is ( told me earlier that meals on wheels had come at 1.37 AM), rings me and asks me what time I'm coming I'm when I've not said i was etc etc. She calls me and says she cant manage, eg she's spilt her dinner and couldn't clean it up because of her bad back, she cant manage the blister pack the doctor has given her, she finds it very confusing.

I am tearing my hair out with what to do next. I work full time as a teacher and am due back at work next week (however am planning on getting signed off as Dad has only weeks to live we have been told). I rung social services on friday and spoke to the colleague of the OT who has been dealing with my mums case. I said i cannot cope with my mum and am due back at work next week. I live a 2 hour journey away from my mum, i am an only child, my mum has no friends where she lives.

She and dad own their own house and we have had to face the fact that this will need to be sold at some point. What i want to know is, is there anyone else out there who has been in a similar situation? Have you got parent who you cannot take care of and what has happened? She is disorientated by the people that come in and visit at the mo, it seems to be a different person every day. I feel like she is beyond a nurse/carer coming in once/twice a day.....she simply cannot manage the running of a house or doctors appointments any more, just to give 2 examples.

What have other people done? I have been reading about 'extra care' housing that takes people with dementia (btw we have appointment at memory clinic tomorrow) but has anyone managed to get a relative in, it sounds like they Re very hard to get in to? Please any advice would be gratefully received as i am desperate here.

Thank you in advance

DollyO

 

[Anniewragby]

First of all, welcome and I am so sorry that you are having such a bad time. As a fellow teacher can I suggest that you talk to your head ASAP and get compassionate leave as you can't teach and care at this level even if you lived closer. It seems possible that your dad has been helping your Mum to cope and masked her problems - that certainly happened to my parents. I think you need more advice - GP or social services before you try and move your Mum, it maybe that she needs more than extra care housing because things are only going to get worse not better..... Could she move nearer to you? Can she afford to pay for more carers for now? When my parents were as confused as your Mum they started going out at night as well as mum wandering during the day. Door alarms are great but someone has to go round what ever time of day it is. Get back in touch with SS - demand more support, use the phrases like "vulnerable adult" " at risk" " carer breakdown" Just like teaching; make lists, prioritise, phone people, be assertive and keep strong!
And keep looking at Talking point because it is a massive support...........
all the best

 

[Bajank]

Seek support

Hi, so sorry to hear what you are going through.
I work for a housing association who build extra care schemes and run the services in the schemes. I am also the daughter of someone who developed vascular dementia last year - which was very suddenly worsened by a stroke. So - my sister and I had to face similar issues.
Firstly, regarding extra care. Most schemes require that people who move into the schemes are local, or have a local connection. So - you need to find out if such schemes even exist where either your Mum or you live. If they do, you need to ask if they are able to offer services for people with dementia. In my line of work, we work with different local authorities and schemes can differ widely. In some cases, schemes have specialist dementia housing and services, but there aren't a large number of these in the country. If you have one near you, it might be right for your Mum. NB. Many schemes these days allow you to buy an apartment through shared ownership. You would need to sell Mum's home but then her capital would go into the property and not go towards care costs.

I didn't really have any of this as an option where I live, and Mum is now in residential care. She can't look after herself and it would be a danger to have her alone at home. We found a home that is 'dual registered' ie. provides residential and nursing care. It also has 'EMI' services for people with dementia. That all means that she will be able to stay there if either her physical health or mental health deteriorate.

I have to say that the place she is now is lovely, with very knowlegeable and caring staff. Before choosing a home, I dropped in to visit it without an appointment (and my sister did the same) and we were both impressed. If this is the route you go down, you will need to be very firm with your Social Worker. To them, resi care is a more expensive option and they would prefer to keep mum at home. My Mum was awaiting results of the memory clinic tests when she had her stroke. Her dementia was diagnosed while she was in hospital. So, it was the hospital social worker and a panel of medics and nurses we had to meet with. They all agreed she couldn't go home - but they only allowed 2 week's resi care at first. We had to be very persistent in saying we wanted her to stay.
I have the same GP as Mum and she was fantastic. It was very comforting to hear that she visits the scheme and believes it is one of the best in the area.

So, in a nutshell, you need more advice, more support, and I quite agree, some compassionate leave to allow you the space to make some big decisions.

I have some difficult visits to Mum, and I have some really lovely visits too. I get less upset and guilty now and I know we have done our best for her - but it has taken me 10 months to get to this point. Remember, whatever path you decide to take, it has to work for everyone, and that includes you.

I wish you the very best,
Bajank x

 

[DollyO]

Thanks so much to both of you for your advice.

So much to think about. I am going to call social services tomorrow and chase up the OT and re-assessing mum's living situation. Do you think her having a dementia diagnosis would make her case stronger? Having dealt with her already, i very much sensed that she was trying to supply mum with as little support as possible. How can i be firm when they sound like they have alresdy made up their minds before theyve even come round. My mum is very deceptive, she'll make out that she's ok sometimes but then makes my life a misery by ringing me at all hours of the day saying how miserable and even suicidal she feels. Are there any key things that i should be saying to OT? Thanks for the advice about "vulnerable, at risk" etc.

I have made notes, it's hard when you really have to fight.

Bajank - i was wondering if your mother self funds the care in her home? Or if not, is that why social services were reluctant to put her there?

 

[Pickles53]

A small tip which may help,if you are looking at moving mum nearer to you... I got mum's GP and a SW from her local authority to write a letter of support setting out her medical/care needs and why it would be beneficial for her to move closer and into 'extra care' housing. We were advised that this would help her to be classed as a higher priority as there was only a very limited amount of this type of housing available.

Although in the end we didn't put this to the test (because sadly mum's condition deteriorated too much for this to be viable) so went directly to residential care home, it might work for you.

 

[DollyO]

A small tip which may help,if you are looking at moving mum nearer to you... I got mum's GP and a SW from her local authority to write a letter of support setting out her medical/care needs and why it would be beneficial for her to move closer and into 'extra care' housing. We were advised that this would help her to be classed as a higher priority as there was only a very limited amount of this type of housing available.

Although in the end we didn't put this to the test (because sadly mum's condition deteriorated too much for this to be viable) so went directly to residential care home, it might work for you.

So sorry to hear about your Mum. Thank you for the advice, this is very useful, need to make an appointment for Mum to see her GP tomorrow if possible so will raise that then.

 

[Bajank]

Bajank - i was wondering if your mother self funds the care in her home? Or if not, is that why social services were reluctant to put her there?[/QUOTE]

Hi,
Mum doesn't self fund (she does pay an element of the bills because of her personal pension arrangements). However she didn't have a high level of savings, nor a property to sell.
Age UK have advice on their website - how to pay for and select a home. (I tried to put you a link here but this forum won't let me!).

We also found that the care home we chose were very, very knowledgeable and supportive - so it could help to visit a home and ask advice (even if it isn't the home you eventually choose).

To find places for your Mum, the following website might help - again, I can't put a link so I hope you can follow the instruction to - put housing care as all one word and it's a dot org after that!

You can search for extra care and resi care on this site (refine your search so that you don't look at sheltered - it isn't going to be enough support for Mum.

I think seeing the GP is a really good move - all the professionals have been through this several times before and can give good advice. Like me, you are going through this for the first time and it is a maze!
You will get there!

 

[DollyO]

Hi

Thank you for the last response Bajank. Useful information. I have now spoken directly to about 4 extra care homes in the area. 3 of them said mum needs to be referred by her social worker. Having badgered the OT enough and saying i was at crisis point, she has finally referred mum to a social worker, so she should have one in the next few weeks. Small victory!

The manager of the other home was very nice on the phone and invited me to come over tomorrow morning and have a look round. They take some self referrals so mum could have a slim chance of getting in.

I took mum to her test at the memory clinic yesterday. She didn't score too well on the tests and we were told that she is showing mild-moderate signs of cognitive impairment. She will have a scan next but a formal diagnosis wont come until december we were told . Seems very long to wait.

Having spent a lot of time with her recently, her major problem at the mo is remembering what day it is and not being able to tell the time, tell what part of the day it is sometimes. I have read old posts about this on TP and am now aware this is very common. I feel really sorry for my mum, she hates feeling this confused. I wish i could stop this all from happening.

The GP she saw recently was useless but after some pressure from me agreed to refer mum on to the 'proactive care team', does anyone know exactly what they do?

I spoke to my GP this morning who was more understanding and has signed me off for at least 2 weeks while this nightmare with my dad's condition continues. This is fantastic as it means i can spend more time with him and i can try and sort more out for mum.