Dilemma

[elizabethsdaugh]

Hi

I'm hoping someone can give me an idea as to how I get my mum to accept the need for carer and or sitters.

My mum is refusing to accept the need for help. We live together and I gave up work to care for her over a year ago, but I'm struggling as she's panicking if I go shopping or to see friends so its hard to leave her alone.

I cannot explain to mum she's being unfair, she'll never understand and has been selfish all her life anyway. I have spoken to the Alzheimers Society and to Social Services and they say whilst she has capacity, which she probably does she cannot be made to accept help so there's nothing they can do. This is making me ill. She's my mum I should love her, but I don't love or even like her anymore, it's ok to say it's the dementia, but this has been her personality all my life and the reason why she's fallen out with family and friends in the past meaning there's no one close to us willing to help.

Do I take a hard hearted approach and leave her alone and ignore the hysterical phone calls because she's alone for a few hours, or am I being unfair, should I stay close at hand and try to ride it out. Leaving her alone could mean she goes wandering if I ignore her calls on the other hand I will crack soon if I'm here 24/7. By the way I should say she's refused day care too. I do get 2 hours free when she goes to a pensioners group with her few remaining friends. Maybe that should be enough, but it's not.

 

[fizzie]

I had a very similar problem with my mum. I had some free carers hours from my carers assessment each week and these were done by Crossroads Care and we had a great sitter (we had 3 total failures before our Michelle was sent from Heaven lol) - it took her about 6 weeks some weeks mum wouldn't let her over the threshold, some weeks she would let her in and then ignore her but nothing, or she would tell her she was going to call the Police, absolutely nothing fazed this sitter, she told me that in the end mum would give in and she was sooooooooooo right and they turned into 'best friends', my mum loved her and couldn't wait to get me out of the door!! (she didn't have to try too hard lol). We also had a local lady who came every morning to get mum ready for lunch club so that i could get to work and to give her a strip wash etc and that took a while to introduce as well, i was a quite firm about it but the carer was also brilliant and quite firm and refused to give in telling mum she had to be clean and fresh etc and it did work in the end we had 2 years of that and it meant that mum could stay at home which is what she wanted more than anything. A very wise matron at our day hospital told me to get things instigated as early as possible because people become very resistant as time goes by - best piece of advice I had and she was so right, change becomes more and more difficult. I should stand firm but be prepared to go through a number before you get the 'right' one

 

[fizzie]

sorry i just read the end bit - my mum also refused lunch club at first but I was REALLY firm about that and said it was either lunch club or a care home because i wouldn't be able to cope (I felt like a pig) and she did go, within weeks it was her second home and she loved going, she went 3 days a week from 10 til 2.30 and it saved my sanity and one day to a memory club which was 10 til 4 and it also saved my job . Please be firm or you are right you will crack - 2 hours is NOT enough time for you x keep posting

 

[Witzend]

I'm sorry, this must be so hard for you.

One possibility might be NOT to say that you're getting carers in for her, you're getting help in for yourself, to do some cleaning or ironing or whatever, while you're out. And then do just that (having explained the situation to whoever comes). At least there would be somebody in the house.
If your mother objects, I think your only course is to override her - she has lost the ability to consider anyone but herself, so you do need to take charge and look after yourself, too.
And I think I would try to be strong enough to turn off my phone while I was out.

 

[zeeeb]

Sounds like it's not going to be easy, but you may have to force her hand, perhaps by having to go away for a week, and putting her in a position where a carer can come to check on her, but to have your phone off so she has no choice than to accept help from somebody else. May sound cruel, but it's not fair on you to have to do it all. It's obviously gone past the point of being too much for you to handle on your own. You deserve a break, and common sense and fairness and logic is often absent with dementia sufferers. It seems as though the only way to force her hand is to remove yourself from the situation for a while.

 

[looviloo]

Do you have power of attorney? Has your mum had an assessment, to determine whether or not she really has capacity? Have you asked for a carer's assessment?

I agree with the others and think you might have to take a harder line... it's so, so difficult but necessary for your own health and well being. Could you perhaps speak to your own GP about it, maybe you could get some advice from them?

I think if it were me, I would organise myself a few days away (maybe at a friend's) and have carer's come in to see to her. If mum rings with a problem, I'd call the carer's to deal with it. Or simply organise the care visits and not tell mum. You are important too! Take care x

 

[Selinacroft]

Having a similar problem myself to a lesser degree. I gave up work to care for Dad but he has just about accepted half an hour of outside help in the mornings. I found out at my Carers Assessment I could have 2 free hours of help per week myself from the sitting service so have organised this through a care company and stressed at the care plan meeting they had to sell it to dad as help for me and not sitting for my dad . The lady arrived and I was not back from work so she came in and announced to dad she was going to sit with him for 2 hours. He nearly erupted and was in a ranting moaning mood for the rest of the day. I am going to persevere but it is hard finding them things to do out of his way. I asked her to make an apple crumble and provided a ready made crumble mix-how could this possibly go wrong? She looked at the rhubarb and started shredding it into spaghetti, then looked at an apple and said she couldn't use a kitchen knife. She asked me for a peeler so I gave her a potato peeler in disbelief, then she started to sort of grate bits off it, ten minutes late, she looked up triumphantly and said- "Done one". I proceeded to show her how it could be done with a knife in 30 seconds and found her another challenge!. I think the only way I can make use of the service is to supervise some cleaning while being present, and then use the time I would have been doing it myself to go out later, not quite the intention but some sort of help.
I can only say, stick with it, stick to your guns and accept the tantrums. Accept the fact they will never understand logic or fairness, or that you have needs and are not their slave. You have to do the thinking for them.

 

[jasmineflower]

Hi
I think Witzend has the right idea. It's how we introduced a carer to my FiL who was dead against any intervention!

We found a private carer with good references and she was happy to be "the cleaner" and that's how she started. Generally cleaning up and chatting to him as she went. Once she was familiar she managed to persuade him to let her change the bed (after months!!) Sometimes she would just sit and chat for an hour. Eventually my FiL forgot how it all started and she became a friend and someone he turned to for help with everything. Worth a try!

 

[CatLady Sue]

Hi elizabethsdaugh. I fully understand your feelings and it's a relief to me that other people experience similar. Although my poor dad is primary carer for my mum, i am having the same dilemma in trying to get help for him that she won't accept.

It makes me so angry that mum is oblivious to how muich dad & i are struggling and how dad lets her dominate (as both of us have always done) - yes, i'm guilty of this too, another reason for being angry! She's always been selfish so it's a struggle to keep reminding myself that she is suffering from an illness. I keep thinking (wrongly) that if it had been dad that had dementia he would've been a pussycat to look after.

Some very good suggestions here, the time is coming soon that i will be trying some. I hope you find something that works.

 

[Jessbow]

The only way I could ever get my mother to agree to any help ( before it finished for Dad) was to sell it to her as someone needing a little job ( was a local private carer that we knew anyway) and her having Emma twice a week for a couple of hours would be doing Emma a favour.

Reverse the psychology!

 

[susanh13]

I was staying with my mum too. I sold it in "we" are not coping and "we both need help and looking after" and mum gave in.

 

[little shettie]

I know exactly what you're going through! My mum always ruled the roost and refused point blank to have any help. She could manage perfectly well she'd say, but was quite happy to let me run myself ragged, managing my home and affairs plus hers! In the end I got a capacity assessment done and once she failed that, the POA I had came into force and boy did that make life easier! SS make me laugh, they pass the buck all the time, saying mum has capacity so theres nothing they can do. That's BULL!! I had the same from them and in the end I'd had enough and complained loudly and suddenly offers of help we're coming from all directions! Please do not let your mum rule you or your life to this extent. I wish I had done so earlier but get some help in, start small and as others have said, say its for you, even fi they just come in and have tea and a chat. You will find they actually look forward to it and miss them. Once they have earned their trust, you can then increase the hours to suit mums needs. Have you got Power of Attorney? If not, you really should get that sorted first, then get the assessment for mum. I hope you get something sorted, I know how tough it is but persevere and you will get there xx

 

[elizabethsdaugh]

Thank you everyone for your kind words and suggestions. I've tried some suggestions, but mum's stubborn refusal to let anyone in the house, even friends aren't welcome over the threshold makes it very difficult.

Mum has recently proved she is capable of completely loosing the plot by getting her hands around my throat because I was trying to get her to accept a cleaner (really a carer of course). I better say mum didn't press and she let go immediately, but it proves how far she will go. She is totally resistant to everything and in her mind needs no help from anyone. I recently met with a lovely lady from the Alzheimers society who gave me loads of advice, especially about a carers assessment but the bottom line is whatever is available to me isn't available if mum won't accept it and she won't so it seems no acceptance means no help.

Little shettie mentioned capacity, how does that work? Mum is a fine actress and can maintain a pretty normal persona in front of strangers for quite some time and she'd be on her guard with anyone from a medical background. I truly think her capacity is wavering, but I think her oscar winning performances can hide it.

Whilst I'm posting I also want a moan, so apologies in advance. We went to a small family party yesterday, they all know mum has Alzheimers. One of the people took me to one side to tell me how well mum was doing. I was fuming. I know its a nice thing for him to say, but I wanted to reply how the h*ck would you know! You don't seem to see see she's acting like crazy and in between when she can't work out how to join in she's staring into space. The other hum dinger was are you enjoying being a lady of leisure. My BIL stepped in and said she's hardly that to be fair on him. Lady of leisure they must be joking. No freedom day in day out with a bitter old lady who wants to go home, gets anxious if alone and who has proved she can get physically aggressive if her mood is bad enough, yep my dear family life is a picnic!

 

[little shettie]

Elizabethsdaugh;
I completely know where you're coming from, my mum was an Oscar winning actress if ever there was one! In the end, you have to shout loud, find out where your local Older Adult Mental health team are based and call them. Explain the situation and tell them you want mum to have a Mental capacity test as her resistance to help (and it is really common) is not only making life hell for you but putting her at risk as you can't be there 24/7. Make it up if you have to, she wanders, shes tried to use the cooker and left it on, lay it on thick, anything you have to get help! The test will reveal the truth and being an actress won't help with the questions they will ask. Trust me. We had mum tested and she failed, then I stepped in and once in control, life became much easier. You have to be strong and stand up to mum. Easier said then done I know! I feel for you, I've been there! xx

 

[Shedrech]

Hi elizabethsdaughter
looviloo asked if you have Power of Attorney - if not, please do all you can to get these both in place, Financial and Health & Welfare - if your mum is deemed to no longer have capacity and you aren't her Attorney, then you will have no immediate right to take over her finances and will have to apply for Deputyship

if your mum is good at keeping up Hostess Mode and so not presenting to others as she does to you, maybe you could film her on your phone to show her behaviours to medics - I'm not being flippant, and certainly you will be careful who sees the film and how/where you save it, to respect her confidentiality - sometimes even the professionals have to see for themselves before they grasp the full picture

as for the family - I'm afraid I would tell it like it was so that I was actually answering their question instead of doing the social chit chat, not in too much graphic detail but enough to give a taste of what life was like - people then have the information and can choose not to ask again or actually take it on board and at least be more understanding if not actively helpful

best wishes