Feeling Blue Today

[tryingmybest]

Hi everyone.

I haven't posted on here for a while. I just plod on each day the best way I can. Many of you know Mum has been living with me since April and we went through a traumatic time with my having to go to the Court of Protection in London to attend hearings 3 times due to my sister trying to get "custody" of Mum, get financial deputyship (even though she is being investigated for financial abuse by the police) and a Dols order to try and prevent my Mum having contact with me and controlling who she saw and spoke to. The whole thing was just awful and my home constantly saw a stream of SW's, OT's, Police, Solicitors and a Psychiatrist in and out making our lives hell. Thankfully the court ruled in my favour and Mum was allowed to remain with me, which is where she wanted to remain. The LA are supposedly managing her money on a temporary basis until a Court Deputy is sorted (there are ongoing problems with that as they have left us with no money but that's another story!) and then we have the ongoing problems of contact between Mum and my sister.

In the light of all that has happened and the fact that my sister hadn't had contact with Mum for many years, (until Mums partner died and she then financially and emotionally abused her), Mum now doesn't want contact. The SS have been appointed by the court to facilitate visits which haven't been going very well or haven't been happening at all. My sister has now reported me to SS to say I am not allowing her access which is untrue but I am not going to physically force Mum to see her if she doesn't want to. This has been an ongoing problem but SS have now written to say they think the best way forward is for my sister to visit my Mum once a fortnight in my home which I have to vacate. I'm prepared to do this as at the end of the day it's a court order for Mum to have contact with my sister - even though she doesn't want to. It's a very difficult situation. I have said I am not prepared to leave my home unattended whilst I go out and my sister visits Mum so have requested that she comes on a friday afternoon, a saturday or sunday when my fiancé can be here. I don't feel that to be unreasonable! However my sister says she doesn't want to come on those days as she visits her boyfriend then but surely if she really wanted to see Mum she would rearrange things a bit to fit in with us. She turned up on tuesday this week which is when she says she wants to come. This hadn't been arranged and I was in the shower, showering Mum yet she banged on the doors and windows to be let in but I did not let her as she knows this was not an arranged visit and both SS and myself had written to her to advise the days she could come. I now feel unsafe in my home and my Mum was very upset by all of this. I really don't know how this is all going to be resolved and it is a total nightmare.

However, I'm feeling very sad today. Mum had never been formerly diagnosed with dementia although it had been apparent for a while something was wrong cognitively and the court ordered a psychiatrist to visit a while back and he said Mum had no capacity to make decisions about anything yet due to her being a good conversationalist, this masked the fact anything was wrong initially. Over the past few weeks things have somewhat changed and Mum doesn't seem so keen to get up although I usually manage to coax her and we often go out and she enjoys herself. Today I am having one of those days when she won't get up and I feel so sad about it. She seems to no longer have much idea about toileting and hygiene so I do everything for her that way and get her dressed too. She still eats reasonably well but seems to be sleeping a lot more in her chair and then not sleeping so well at night. I've also noticed a few times she has become confused whilst I am getting dinner ready when I leave her in the lounge and she wanders through and says she feels her head is woozy and she doesn't feel right. I guess this is sundowning? She doesn't know there is a problem and I have never told her, but she obviously is getting a bit concerned of how she is feeling sometimes.

I have no idea of what type of dementia she has, but wonder at what stage she is in and if anyone has any ideas? She and I have good conversations but she doesn't remember anything of her past at all and just says she's pushed it all aside as it's all gone. I must admit to feeling sad and it seems strange for her to not even remember about when I was growing up so they are conversations we cannot have as she never remembers. She does remember places I take her to and occasionally lays the table for a meal or asks if she can help with anything so it's all very strange at what stage we are in this journey.

She is very easy to look after and very placid and we sing together a lot and listen to music and have a good laugh about things and enjoy lots of trips out. I gave up my job, my friends and hobbies to care for her and that is just how I want it to be. I don't want outside help as I was a former carer and I am more than happy to do everything for her but I just get sad sometimes obviously seeing the decline.

Guess I just wanted to unload today.............

Last edited by tryingmybest; Today at 01:43 PM.

 

[Saffie]

TMB, I recall,your troubles over the court and your sister and am glad that they decided in your favour eventually. You had to work so hard for your mother's sake. However, the situation now is so very difficult for you.
Dealing with dementia is so very hard, I am amazed that some people like to make it harder still.
I'm glad you have unloaded a bit though I have very little I can offer in the way of advice.
Hopefully, if you never allow your sister access on days when she visits unexpectedly, she may back off but it's far from pleasant to have to live your life this way. It's something that the SS are with you with this.

I'm sorry your mother is not as upbeat as she was. I think this is natural but hard for you to see. The stages of dementia only really apply to Alzheimer's and to be honest, these seem to vary enormously too. I hope,you have many more happy times to spend together to offset the not-so-good days. x

 

[sleepless]

Tryingmybest, we read of an awful lot of unfairness on TP, but I have long thought that the situation you have been placed in is about the worst case I have read.
You should not have to leave the privacy of your own home and possessions at the mercy of someone as patently against you as your sister is. It is dreadful, and your acceptance of the court order is something I personally would struggle with. But I understand why you accept it.
However, there should be someone present at her visits, to protect your property, and indeed to keep your Mum safe from emotional abuse. Have you approached Alz Society or Age UK to see if they can provide someone to fulfill that role? If it helps, print off the posts telling the whole story?
As to your Mum's decline, obviously there will be a certain steady deterioration in her condition, but the situation she finds herself in with your sister is unhealthy and in my opinion downright cruel, so probably adds to her decline. You have my sympathy, I feel so angry on behalf of you and your Mum, that the 'powers that be' can ignore your Mum's welfare in order to tick all the right boxes.
Do try to get an advocate who can be present at your sister's visits, for your peace of mind and ultimately your Mum's welfare.

 

[canary]

Hi TMB, its good to hear an update.

Your sister is certainly trying it on isnt she?
Legal things seem to take an age. Im glad your mum is at home with you, but its a shame that the rest isnt sorted.
Its always sad when the next stage of dementia becomes obvious. Mum has started stuttering and I suspect that it marks the beginning of her language going. It doesnt really matter what stage your mum is at (although I guess its probably middle) - whats important is that you can deal with what you have to. Im glad she still enjoys things like trips out and you can have good conversations and laugh together. These are the things that remain.
You are doing wonderfully well
xx

 

[jan.s]

Hi TMB

I am sorry that your life is so much of a rollercoaster. Caring for a loved on with dementia is tough enough without having the unhelpful attitude of your sister. I feel that SS need to take a strong line with her, and, as you say make her stick to the options she's offered.

You are a very caring person, that is very clear and generous too, making your home available for the visits. I am not sure I would be so willing to vacate my house as you do.

I hope things start to straighten out soon. Meantime, sending hugs.

Jan xx

 

[bemused1]

Hi TMB
No wonder you're feeling sad with all this thrown at you.
No matter which way this is looked at, I cannot understand why the rights of your sister have precedence over your mothers, not to mention yours. There seems to be a complete lack of sense. Your poor mum, being forced to see a daughter she doesn't want to.
It is sad, every point at which you can say, she was doing this before and can't now. But you have good times together still, so cherish them. All this additional stress can't be helping. But stages are difficult to assign as we know everyone differs.
Wishing you the best. I would love to see sense prevail and you and your mum left to spend quality time together in peace. I live in hope
Take care xxx

 

[tryingmybest]

Thank you all from the bottom of my heart. I can't tell you how much better your supportive comments have made me feel. I know so many people are in much worse situations than me especially those coping with both parents at home being the sole carer. It really does help to offload to people who understand. Thank you!!

 

[tryingmybest]

Just an update regarding my sisters visits, SS wrote to us both reiterating and reinforcing their decision that if my sister wants to see mum they feel it should be fortnightly at my home and on one of the days I offered which is when my fiance can be there to keep an eye on things. I have sent two further texts to her asking her if she could let me know when she wishes to come but still no response!!! I cannot hang around waiting for her decision and the days are getting booked up now with various Christmas trips and activities. Do you think I should just leave it now and not try and contact her again? I'm worried she's plotting something!!

 

[Shedrech]

Hi tryingmybest
I don't really know what else you can do - you've contacted her twice with no reply - would you be willing to send one more message to suggest a time that would fit with your other plans, just explaining that your mum's diary is getting a bit full, and leave it at that?
And I suggest you take a photo of each text as proof that they were sent - maybe even letting SS know the situation, so that they can see that it is NOT you who are making this situation difficult
maybe she is planning something; maybe there is a reason for her silence - but from my perspective, at the moment, she is providing evidence of how awkward and thoughtless she can be

just a question, if I may - I thought that the court had agreed that a social worker should be present during her visits (though it hadn't worked out that way the first time) - has that gone by the board? Apologies if I am misremembering.

 

[Saffie]

I'd leave it up to her now but keep a record of all communication that takes place both to and from your sister with dates etc. You never know when you might need it.
You really have done all you can in very difficult circumstances. Best of luck. x

 

[bemused1]

Hi tmb
I' m inclined to agree with shedrech, one last go and make sure you have records to prove your point.
I' m so sorry this isn't sorted yet. So stressful for you and your mum.

 

[jan.s]

In my opinion, your sister knows exactly what's going on and is choosing to ignore communications until such time as it suits her, in an effort to create yet another fuss! Maybe not a charitable viewpoint, but how I see it.

I would just leave it now, and let her get on with how she wants to play it. J xx

 

[fizzie]

Hi there
If you even suspect she is plotting I would send emails copied to the social worker so that she can see who is being disruptive. I think it would be a shame to spoil your Christmas fun by waiting around for her but I can see why you might be nervous. Just try to leave a paper trail so there is not disputing xxxx

 

[tryingmybest]

Thank you for your comments. I think I had pretty well made up my mind that the last text I sent would be the last, together with the email from SS I copied and pasted, as a text to remind her what they had said. I can't do anymore really. All emails and texts are saved should I need them for the future and I have offered SS the chance to view them should they wish. I have also contacted both SS and the court official Solicitor and explained the situation.


Shedrach,you were right and SS have monitored four contact visits but feel they no longer need or wish to be involved as they haven't the manpower. They have asked that my sister and I resolve matters between us now! Well I've tried to fulfil my part of the court order but what more can I do?

 

[Shedrech]

In my humble opinion you have bent over backwards and then some - you've kept all those involved up to date
so just let it be

odd that your sister starts making extra demands after the chaperoned visits ended - and responds with silence - so she is going against the court's and SS's requirements - let that be on her head

I am so sorry that all this gets in the way of you and your mum carrying on with your lives together - it's tough enough witnessing her decline without being made to feel unsafe and vulnerable in your own home

easy for me to write, I know, but you've made your decision, so set all this aside, carry on with your festive plans and take care of your mum and yourself

sadly, we can't chase your blues away, but we are here to share whatever the colour of your mood - I wish you some sunny yellow times - keep singing

 

[tryingmybest]

Thank you so much Shedrech! Xx

 

[fizzie]

I hope you and your Mum find some peace. I think you are brilliant xxx

 

[tryingmybest]

Ahh thanks Fizzie. I'm definitely not brilliant lol. Just try to do my best for my lovely Mum here and juggle like mad with all my rescue animals and trying to keep the home nice!! Really ought to spring into some sort of action and decorate the house for Christmas so its pretty for Mum but its just another huge job to find time for lol. Xx