Mom with dementia

[BHowes]

Hi

My mother was diagnosed with 2 types of dementia 18 months ago. We can not believe how quickly this horrible illness has declined in recent months. She lives on her own but we visit every day to make sure she has eaten, washed, dressed etc (we all work full time) but she is left for long periods on her own. She has flatly refused to have carers going in to help her. It is now at the stage where she does not recognise her own home and keeps packing her suitcase and walking the streets looking for her house. She keeps losing her front door keys and phones me at all times of the day and night (more often at night) to tell me she's been locked in some ones house for days, with out food or water - she is and really upset and confused. I have to leave work / home / bed and drive straight over and console her.


Neighbours have found her wandering the streets, lost and confused. They take her back home and call me - again I drive straight over to make sure she is OK.

As you can imagine, this is taking it's toll on me and, although work has been very understanding, I have lost so much time recently.

We have made the heart breaking decision that Mom can no longer cope on her own - we are unable to give her the 24 hour care she now needs, so we are now looking for a residential home for her.

Mom has no assets (she lives in a council house) and no savings.

She has been assessed by Social Services and funding has been agreed BUT ... She has been allocated just £405.00 per week (which includes her Pension). Every care home I look at costs far more than this. Although we all work, none of us has any expendable income to top up any fees. it's so frustrating - Mom has worked all her life (some times running 3 jobs to make ends meet) and has never claimed any benefits.

What do we do now ? How do we find a good care home with in our price range and local so we can still visit every day ?

Any advise would be greatly appreciated x

 

[Beate]

The council have to offer her at least one home within that price range. If they can't, they simply have to up their budget. Top-ups should only come into play if you want a different home, a bigger room or a better view.

http://www.whentheygetolder.co.uk/should-you-be-paying-care-home-top-up-fees/

http://www.independentage.org/factsheets/care-home-fees-paying-top-ups-in-england/

http://caretobedifferent.co.uk/care-home-top-up-fees/

 

[Adcat]

It's a tough situation and I get your anxiety. You could consider writing to your MP for back up. Tale care.

 

[Bod]

When she wanders, get the police involved, get an incident number, this will get the attention of the Local Authorities, and help speed up the process.

Bod

 

[Amy in the US]

BHowes, welcome to TP. I am so sorry to hear about the situation with your mother and that you had to find us, but hope you get some relief/support/advice from being here.

You've had some suggestions and I expect you will get more. As I'm in the States and our systems are quite different from each other, I don't have practical advice regarding funding, et cetera.

I do want to say (and I realise this is not helpful to you right this minute, so please bear with me) that although of course it's terribly distressing to consider moving your mother to a care home, that it could work out for the best, for everybody.

When I was facing this situation with my own mother, the missing piece for me was that nobody said to me: your mother could be better off in a facility than at home. This could work out for her.

My mother was terribly anxious and having panic attacks, couldn't sleep, didn't take her medications properly, didn't eat properly, lost a great deal of weight, was often in pain, wasn't bathing or putting on clean clothes, her flat was a tip, there was unsafe wiring, she was still driving, etc, etc. It was an accident waiting to happen and she was miserable. She was found early one morning (in the winter) with no coat on, disoriented, bruised and injured, and in full flight with hallucinations and delusions. This led to a hospital stay which in turn led to her move to a care home.

Now, ten months later, she is so much better that it is hard to believe she is the same person. She has company 24/7 if she wants it, and can choose not to participate in activities if she wishes. She goes on regular outings from the care home. Her medications have been sorted out and she has much better pain management. Her anxiety is 99% reduced, she's put weight back on, she sleeps better, she is clean and safe and warm and supervised. And I am no longer kept awake at night wondering if she is going to get in her car and kill someone, or go for a walk and never come back, or burn down her building.

If anyone had told me a care home could work out this well for my mother, I might not have believed them, but it would have been good to hear it. So, I want to be that someone to tell you, this could work out.

Very best wishes to you, and post here anytime.

 

[smartieplum]

Amy, what an inspiring post

 

[BHowes]

Thank you

BHowes, welcome to TP. I am so sorry to hear about the situation with your mother and that you had to find us, but hope you get some relief/support/advice from being here.

You've had some suggestions and I expect you will get more. As I'm in the States and our systems are quite different from each other, I don't have practical advice regarding funding, et cetera.

I do want to say (and I realise this is not helpful to you right this minute, so please bear with me) that although of course it's terribly distressing to consider moving your mother to a care home, that it could work out for the best, for everybody.

When I was facing this situation with my own mother, the missing piece for me was that nobody said to me: your mother could be better off in a facility than at home. This could work out for her.

My mother was terribly anxious and having panic attacks, couldn't sleep, didn't take her medications properly, didn't eat properly, lost a great deal of weight, was often in pain, wasn't bathing or putting on clean clothes, her flat was a tip, there was unsafe wiring, she was still driving, etc, etc. It was an accident waiting to happen and she was miserable. She was found early one morning (in the winter) with no coat on, disoriented, bruised and injured, and in full flight with hallucinations and delusions. This led to a hospital stay which in turn led to her move to a care home.

Now, ten months later, she is so much better that it is hard to believe she is the same person. She has company 24/7 if she wants it, and can choose not to participate in activities if she wishes. She goes on regular outings from the care home. Her medications have been sorted out and she has much better pain management. Her anxiety is 99% reduced, she's put weight back on, she sleeps better, she is clean and safe and warm and supervised. And I am no longer kept awake at night wondering if she is going to get in her car and kill someone, or go for a walk and never come back, or burn down her building.

If anyone had told me a care home could work out this well for my mother, I might not have believed them, but it would have been good to hear it. So, I want to be that someone to tell you, this could work out.

Very best wishes to you, and post here anytime.

Thank you so much for your reply and I do apologise for the delay in responding but we have had a very busy few weeks.

I would like to tell you that we have found a care home and Mom actually spent a whole day there just before Xmas - when we collected her she was a different person, so happy and full of life. We have arranged for Mom to be admitted next Monday (although we haven't told her yet as we don't know how the brooch the subject !). We are sure she will be much happier once settled.

 

[Amy in the US]

BHowes, you are quite welcome. Please don't feel you must apologise for not being here for a while; we all understand about things getting busy.

I'm so glad you came back with an update and can only hope that the care home works out well for your mother.

I agree that it is very difficult to approach the subject of moving into a care home. Each family has to do what works for them. Some ideas I've heard here and elsewhere include:

-a direct approach--you are moving into this care home
-taking the PWD (person with dementia) on an "outing" or "out for lunch," but you're actually going to the care home (where you might, in fact, have lunch or tea)
-a modified explanation (the doctor says you need to live here until you get better/while your [something] heals/to sort out your medications; don't give a definite time frame and blame the doctor, hospital, or any other authority but yourself)

Or some combination of the above.

If you can work with the care home staff so that they know you are coming, and they can assist with the transition, it may help (at least help you, if not your mother).

It may also help to arrive near a meal time, and for you to stay for that (or not). This can help establish the new routine.

Don't linger over leaving. The phrase that works best with my mother is "see you soon," not "see you tomorrow" or "see you Tuesday." Anything specific gets her worked up trying to remember and makes her anxious she has to do something. This may or may not be true in your case, of course.

As far as you are able, be calm, pleasant, and cheerful. My mother has an amazing/alarming, laser-like ability to hone in on the slightest variation in tone of voice or body language, to the point where I can't demonstrate the tiniest amount of stress or upset in any way, ever.

If you are going to tell your mother about the move (and that's up to you), I do suggest you not do so too far in advance, as this is likely to only cause anxiety and upset for all of you. There have been past threads on this topic and I'd be happy to have a search for them, if you like.

Do try to be patient while your mother is settling into the care home. Some people do this in days or weeks, and others need months.

Also be patient with yourself. Caring for someone in a care home is a whole different experience. The good news is you're relieved of a lot of the worry and stress you've had with her living at home--no more nightmares about her getting lost or not eating or not having company, for that matter.

On the other side is that you all now have to learn to deal with a new setting, get to know the staff, know who to call and when and for what, when meals are, how the laundry works, that sort of thing. You may also still be dealing with finances, or lack of them, and related paperwork. I don't know if you have a house or flat to sort out as well. It can all take time and is a learning curve. Please get whatever help and support you can, now, and be patient with yourself to get it all accomplished.

I have found TP to be an invaluable resource, but have also gotten help from some local carer's groups and my mother's neurologist. See what is in your area (some care homes have support groups) and give things a try.

Wishing you and your family all the best.