Mum going outside! Help!

[MeganCat]

Mum was always very much against a care home, but when the time came and she moved there from hospital she was well looked after. She was clean, ate well (gained a lot of the weight she had lost at home) and joined in activities (she loves music) and had company. Her quality of life was much improved.

It took her about 6 months to stop saying that she'd rather live with me or near me (she had actually moved across country to a home near me) but she was easy to distract and change the subject. The time I spent with her was quality too - visiting the park, shopping, coffee and cake as opposed to a flying visit and a week full of washing and cleaning and dealing with SS etc.

Thinking of you - Its so stressful, but a care home move can have a silver lining.

 

[curtainsgalore]

I did forget to say. I had to say to SS that I was going to walk away and leave Mum as I had a daughter that needs me for getting to and from school, being a Mum etc. so I would be leaving 1 vulnerable person for another. SS didn't get anyone to Mums until nearly 11pm, but once she was assessed that Mum was in need of 24hour care until a CH could be sorted they were brilliant. Although because of self funding I had to sort the home without much help from SS.
Mum hasn't a clue she is in a care home, 6 days in and I'm just starting to let go of the reigns.
Yesterday was a bad day though, I had to take her dog to Wood Green to be Rehomed, as because of alcoholic dad (died last june) shouting and hitting her, she needs help before going to another family. This too shall pass.

 

[Maldives13]

Thank you megancat and curtainsgalore . I am taking so much strength from this forum. It is really helpful and so supportive. I can't thank you all enough. Off with my sister to start checking out care homes with my sister tomorrow so please keep me in your thoughts.
X

 

[cerridwen]

Please let us know how you get on. We are thinking of you xx

 

[Maldives13]

Bless you cerridwen and others. All happens at the same time - one of my brother in laws has been rushed into hospital. He will be ok but they are away on holiday so won't be able to fly home for at least a couple of months! Quite poorly but will recover thank goodness . Sometimes it feels like it's raining all the time!
Anyway looked at a couple of homes - one is very NHS - staff all seemed nice, but no ensuite loo! Bit of a must for my Mum. The other one was a little too far away. They seem so big don't they? Going to see another home tomorrow afternoon - all of course without my Mum knowing bless her. Think that makes me feel worse as I feel so disloyal! I just keep telling myself we are having a look for when the time comes but I feel so bad.
I just keep crying all the time.
Hope the home tomorrow is nice as it's very close but has no vacancies anyway. That seems to be the other issue - lots of the homes are full!
Anyway please keep me in your thoughts as I feel quite sick!

Thank you all for caring
Jane x

 

[MeganCat]

There's nothing to stop you going on waiting lists of a couple of homes you favour and see which comes up first

 

[cerridwen]

I can't begin to imagine how stressful this is for you and your family and I am not surprised that it's upsetting you so much. I experience being a carer for my Dad as a huge burden. I just can't think of it in any other way, even though I read these carer blogs that talk about the beauty of acceptance, the moment to moment precious experience of caring (what??).... For example, I have had three phone calls about Dad this week, one from his care agency and two from the day centre he attends. I am sick with flu and now I have a list of things I need to sort out for him (including a GP appointment for a wound on his head that he won't let heal) and I feel guilty that I can't help him straightaway because I am too poorly to leave the house.
I think its a huge burden of responsibility to be the one who has to decide that your parent has to go into a CH. I realised recently that the roles have completely reversed for me and Dad is the child and I am the parent now. And I hate it. And I hate feeling guilty, I hate resenting caring for him. Anyone would think I don't love Dad but I love him very much. In the early hours of the morning when I can't sleep I feel like a bad person for resenting the burden so much.
So, I'll tell us both what I would like the knotted and twisted part of me to really believe - we all do our best. Your Mum needs to be safe physically, she needs a calm, positive environment and to be free from worry, as do you and your family. Taking time to shop around for a care home will give her that and give you peace of mind. You can do no more. All you can do is grieve for the person she once was; allow yourself that.
Thinking of you at this stressful time,
Jayne xx

 

[Maldives13]

Well here I am at mums. The door alarm people rang - couldn't pacify mum. When I got here she was fully dressed and wanting to "go home". Breaks my heart so I'm staying the night. At least she didn't go outside tonight!! Persuaded I will take her home in daylight!
Hope some of you are fast asleep! If you are like me wide awake now - well bless you all x

 

[Lindy50]

Hi Maldives, so sorry to hear you're having such a difficult time.

Now you're at your mum's, can I suggest you keep a record of time, date, problems, mum's state of mind etc. How can SS say she doesn't need anyone at night, when you have the evidence that she does?

Keep looking at the care homes, I'm sure you'll find a good one, whether for respite or for a more permanent place

Hope you manage some sleep eventually tonight.

Sending you a hug

Lindy xx

 

[Maldives13]

Hi Lindy. Hug much appreciated and needed. I will keep a record thank you. Good idea as we have social worker and memory clinic out next week. I already have the number of times she has opened the door over the last month - alarm people sent me a spreadsheet . At least most of the time they have persuaded her not to go out. Just a matter of time isn't it though?
Thanks again x

 

[Maldives13]

Just a bit of an update! I stayed at Mums last night. When I got to her at 10.30pm she was dressed and wanting to go home! Eventually I got her into bed and she slept for 8 hours solid. Lucky girl as I had a rubbish sleep!
Anyway point is - Mum was like a different woman today. I am convinced if we could find a way for her to sleep at night her dementia would be less of a problem! Very short sighted of social services not to pay for night care. Mum had such a nice sleep last night. Went out with my sister to a couple of shops and was really engaging!
Anyone else find this?
X

 

[BR_ANA]

Even on stage 7. A good and deep sleep makes difference on dementia.

 

[Maldives13]

Hi everyone.
You have all been so kind, I just wanted to update you a bit. Went and saw a couple more care homes today. I know lots of you are at the same stage as me and wondering what to do!
One of the homes I saw today were really open and said that they felt Mum wasn't "bad enough" to go in their home. They have people with severe dementia who are very loud and can get aggressive and loud! This is very sad because it made me feel so much better. Is that horrible of me? Just made me think my Mum isn't ready for a home or is that me not facing facts! She doesn't want to go in one and I don't want her to. Perhaps in a few months time she might be ready I don't know!
The first home I saw today was really nice and new and clean but no vacancies and 8 on the waiting list. I just saw over 20 people all sitting in a lounge and thought I couldn't picture my Mum there. It was too busy and just not her. My husband didn't agree but still!!
We have a meeting with adult services on thurs and the memory clinic so we will see what they think.
One of the homes mentioned a kind of bed alarm that can be activated by a sensor so if Mum gets out of bed she would hear us saying it's not time to get up yet Mum.
I'm worried that might spook her and let her think we are in the house even though she lives on her own.
I think I'm going round and round in circles and still trying to do anything so she doesn't have to go on a home, but is she safe? She opens the door nearly every night. She doesn't go out because the alarm people talk to her and she listens.
What should I do I'm so confused and sad and heartbroken and feel so alone apart from everyone on TP.
Thanks x

 

[BR_ANA]

The wish to postpone CH is normal , but you must feel it is time to CH. Read CHC report about CH and keep visiting.

 

[canary]

I think its only a matter of time, though, before you reach a crisis, isnt is?

There are various types of residential homes for dementia and often there is a differentiation between the later stages. I think it would be a good idea to look at a few more CHs before deciding and you will probably need to put her name on a waiting list.

Best to do this before the crisis comes, or she could end up somewhere you dont want.

 

[Maldives13]

Thanks canary. I am going to look at a couple more this week. You are right we need to do it before a crisis occurs. Like everyone I just feel I
am letting her down so badly!! She has never wanted to go in a home and I just know when the time comes I will be in bits! I have been so strong and done most of the organising etc for her and have coped better than my siblings but I will so struggle as others have said - you just feel such a failure!!

 

[canary]

No, you are not a failure, you will have organised the very best for her - and that is success.

 

[cerridwen]

Hi Madives13
I am with you on everything you say. There are so many issues, each of which is made more complicated by all the emotions sloshing about. I am in a similar situation to you, although my Dad is not wandering outside (yet). He can do virtually nothing for himself, though, and has a care package put in place by SS.
Unfortunately, he is not self-funding and I am constantly battling SS because they want to reduce his package (against the recommendations of his medical team, the advice of our Alzheimer's Society Dementia Adviser and his social worker, I might add!). Yes, it's about money, I am afraid. I am already paying for home help with cleaning and shopping, I can't afford his care package as well. They have a legal duty of care but they are trying to get round that and I have been advised to go to the Local Government Ombudsman if they refuse.
Well, just to say that Dad couldn't stay at home without my help but I work full time and I am burning out. So, the pressure is on me to make a decision; stay in his own home or care home? If SS put a full care package in place he can stay at home for a bit longer but if not, I am so poorly with various stress-related health problems that I am thinking I might have to make the referral for placement. He isn't 'bad enough' in the strictest sense, but I am having difficulty supporting him and SS are making it ten times as hard for me as it should be. I shouldn't be put in this position and neither should you (or any of us) but it is what it is.
No-one would criticize your decision to place your Mum in a care home. No-one will criticize if you decide to keep her at home. Only you know what you can take. It's not just about the effect on the person with dementia, it's about the effect on the person(s) caring for them as well. What happens if you become so sick you can't do anything for your Mum? What happens if she deteriorates further?
It's a terrible place for us to be in, but you just have to do your best. No-one else could ask for more. Unfortunately like me, the decision is probably yours and your siblings alone, which makes it much harder. Whatever you decide, put your Mum's interests first; and by that I mean, make sure she is safe from harm. For example, having her sitting with a bunch of other people is not going to harm her, her wandering out unsupervised might. Alarm systems are not foolproof either. In a nutshell, only you and your family can know what's the right thing to do to keep her safe. Take advice from the professionals too but ultimately it's your decision. And we are with you all the way, whatever you decide
Jaynex

 

[Maldives13]

Cerridwen thanks for those words. As you say it is hard isn't it to know how far to let it go on before we burn out! Funny I change my mind pretty much day to day really. Mum today is having toilet problems and thinks it's the end of the world! So low and down and she just drags us down with her. I have spent all day with her and still she is just so low. But then I feel bad as tomorrow she will be good and grateful for everything we do. I am going to look at another couple of care homes this week and I have to say I found one that seems lovely. Lots of space and didn't feel cramped so liked that one. Social services have agreed to pay for a weeks respite (with a top up from us I think!) for her but none of us can persuade her to go in. I am going to work this week once I have looked at a few more to somehow get her to a home to have a look!! Social services are on the edge of thinking she needs to go in to one which surprised me as the social worker said a few weeks ago she wasn't ready. Mum is very lucid though and is so set against going in everyone agreed they can't force her to go.
Such a worry isn't it as even when you aren't with them you are still worrying all the time about them.
Sorry I know I'm rambling but Cerridwen I am thinking of you and all the people on here who are spending pretty much every waking thought - should we or shouldn't we?

Thank you again for the support and hope you get sorted as well
Jane x