A bad week - overwhelmed

[JHA]

Not sure if I should post this in the caring section as my mom is in a care home. I am only child it is basically down to me what happens to my mom the only other person that goes to visit her is her cousin - her brother and sister send 'conscience gifts' on her Birthday and Christmas - these gifts only started when she moved into the care home.

My mom is 86 this year and has lewy body dementia and has been in her current care home for just over 2 years - she is self funded. The admission to the care home was during a crisis as I could no longer ensure her safety and she point blank refused to have carers or any other form of help. She was basically found on the street by the police at 2am in the morning and her GP/Mental Health etc advised that she lacked capacity and could not be left alone. Apart from the dementia she is relatively healthy and is mobile.

Lots of little things have been bugging me with her care over the last few months as 'good' staff have been moved to a different part of the home and in my eyes things are slipping.

Arrived at the care home Monday to find a funeral procession blocking the entrance - the actual hearse with the floral tribute to Nan wobbled me a big time as that is what my mom is to my boys.

On going up to see my mom I found her still in bed at approximately 1145 wearing just a tshirt and pair of disposable pull ups and on checking with the carers she had not been up at all that day. I woke her and took her down to the dining room for breakfast as she was hungry I then went off to speak to Management as I was not impressed that she had potentially been inappropriately dressed for bed the night before plus she had not been encouraged to get up that morning. The Assistant Manager was on duty and she sort of agreed that it was not acceptable.

A while ago I had reason to believe that she was not receiving regular personal care so began counting the disposable pants that I took in and basically none went over a five day period. I spoke to the carers on duty and five minutes later the only way to describe it was they appeared mob handed in her room to give her a shower and in the carers own words 'so that I could see she was having one' - there was no way they intended to do it then as it was just before lunch it was purely for my benefit. I even spoke to the Team Leader after about the lack of personal care and he said he would look into it yet when I raised my concerns with the Manager on the Monday she knew nothing about it! Surely concerns raised by a relative should be passed onto Management.

The level of personal care has improved however I still monitor how many disposable pants are being used and keep a note on what she is wearing, hair washed etc. I have suspicions that her disposable pants are now being used elsewhere as my mom will not change herself yet pants are disappearing and the numbers do not tally with the days (for example Tuesday there were 11 yet yesterday there were none). Guess the excuse will just be a shrug of shoulders like it is when I question where the vast majority of her labelled personal things are that just seem to vanish.

One Sunday I arrived just before lunch to find Saturday nights sandwich untouched and still wrapped in foil on her bedside table. Would my mom have actually realised that this little foil package was her tea plus if she had eaten it so long after it had been left an upset tummy could have been the result. This was raised with the carers on duty that day and the Team Leader and once again when I brought it up with Management they had no clue.

One night she left her room, went down the corridor, got in the lift and entered the wing below unnoticed - they only realised she was there when screams were heard as another resident was also wandering and they had a disagreement over something. This was reported to safeguarding and apparently the police were called. They rung me some 12 hours after the incident at about 2pm to tell me yet when they found an unwitnessed scratch on her hand one morning rung me just after 730am - a phone call that early in the morning made my stomach sink into my feet. I went into see the Manager on the Monday after the safeguarding incident and she seemed surprised to see me - I had to explain to her what had happened!

My conversation with Management yesterday did not give me any confidence in fact I got very upset - I just want her to be looked after, appropriately dressed, clean and well cared for. She is settled, sadly I cannot say she is happy (neither am I) but do I consider moving her or am I overreacting.

I went to bed thinking about her, I woke many times in the night thinking about her and I am sitting here typing this with tears ready to fall.

I am in the process of selling her property to pay for the care home and I am terrified that the buyer will not proceed to completion (it sold last year and we basically then went down a rabbit hole for nearly 8 months whilst the supposedly cash buyer was then attempting to sell his property to his neighbour).

I just want to do my best for my mom but at the moment feel so alone in the decisions and completely overwhelmed plus I feel guilty that she is possibly not getting the care she deserves and that is ultimately down to me. My friend came out with the one liner earlier in the week that I should be stamping my feet to get what she is paying for - that hurt. I basically chose my own family over my mom and put her in the care home as there is no way my family (or me) would cope if I was to bring her to live with us.

If you have got this far thank you for reading I just feel a total waste of space at the moment.

 

[jay6]

Hi @JHA So sorry to hear of your struggle with the care home. I often wonder why some so called carers actually do this job. I've seen this sort of things so many times, both in care homes and hospitals. My husband was left in disposable pants and t-shirt in a chair last year in hospital. When I complained I just got 'Oh he's got dementia, he didn't want to dress' which was a total lie. He still knows what is going on and was really upset. He wasn't even allowed to go to the loo by himself. Soon as I complained to P.A.L.'s he was moved and things definitely changed.
Is there anyway you could move your mum and try another home? I know the disruption may be a thing but no one deserves to be treated like an inconvenience, especially when they are paying for the care.
It's not an easy choice to put someone in a care home and must be devastating for you to see her treated like this. I also think it's harder when you are self funding as you are pretty much left to get on with it. Well that's my experience anyway.
Try to stay positive and remember you are trying to do your best like most of us. It's definitely not easy. ((hugs))

 

[Collywobbles]

I would take a breath and write a letter or email listing all of the concerns you’ve told us about above. Make it a bullet point list so it’s easy to see how many individual incidents have occurred. Then send it to the care home manager, and the head office of the company that owns the care home.

The manager seems to be taking each incident in isolation when they need to be seen as cumulative. Outline the reasons why you consider these incidents to be safeguarding issues.

 

[phill]

I suggest that, if you haven’t already done so, write a long letter addressed to the manager of the care home detailing all your concerns, including all those that you have mentioned in your post. Draw special attention to the times when you sought an explanation for something and no explanation was forthcoming. Make sure you keep a copy of your letter for your own records). If possible, hand-deliver it so that you know it’s got there.
On the underwear point, I’d be tempted to stop providing any more disposable pants, and swap them for washable ones labelled clearly with her name. This reduces the likelihood of carers grabbing Mum’s pants to use on another resident and failing to replenish them afterwards (if that’s what they have been doing). But don’t get too hung up about the fact that the number of pants missing doesn’t tally with the number of days passed. It might be that she’s been having “toilet accidents” and they have had to put her in fresh pants each time.

 

[JHA]

Jay6 I can look at moving her but the thought of potentially making the wrong decision literally terrifies me. When my mom was first diagnosed in July 2021 she had a period of delerium and was hospitalised - care homes were mentioned but as her behaviour was extreme at times there was only two that would even consider taking her as there needed to be some level of containment - the care home she is now in being one of them. The delerium resolved itself so she returned to her own home with me providing support until we hit crisis.

After admission to the current care home Mental Health were involved and she is now medicated as regular attempts to leave were made basically using the fire extinguisher as a battering ram. As far as my mom is concerned she has no concept of her needs, in her eyes there is nothing whatsoever wrong with her - I feel like I have failed her.

 

[JHA]

Collywobbles I do need to take a breathe as yesterday I went in without really getting my thoughts in place.

 

[JHA]

Phill I did email the Manager after the conversation about personal care not being done regularly - but either I missed out a dot in the email or I was given the wrong email as it appears she has not received it.

When I have got my thoughts together there will be an email in their inbox on Monday and a hand delivered copy of it.

I feel so bad that things have slipped and I basically have allowed it to happen.

 

[jay6]

JHA You really mustn't feel you've failed her or feel bad. It is so hard to look after someone with Dementia. You have other things in life going on apart from looking after your mother. I find it extremely hard looking after my husband so goodness only knows how someone copes with having to deal with families, work etc. and have to look after the PWD
Don't feel any shame, you've done your best and are still trying to do that.
Maybe do as suggested, make a list and speak to those in charge. Good luck and remember you certainly aren't alone

 

[Toopie28]

Jay6 I can look at moving her but the thought of potentially making the wrong decision literally terrifies me. When my mom was first diagnosed in July 2021 she had a period of delerium and was hospitalised - care homes were mentioned but as her behaviour was extreme at times there was only two that would even consider taking her as there needed to be some level of containment - the care home she is now in being one of them. The delerium resolved itself so she returned to her own home with me providing support until we hit crisis.

After admission to the current care home Mental Health were involved and she is now medicated as regular attempts to leave were made basically using the fire extinguisher as a battering ram. As far as my mom is concerned she has no concept of her needs, in her eyes there is nothing whatsoever wrong with her - I feel like I have failed her.

Oh @JHA, I'm so, so sorry. This sounds like all of my posts. I get it. I'm also terrified that I've made the wrong choice.

You have NOT failed. I know no matter what, you are going to think that - I know as I think this every day.
But we're doing the best that we can. and every day we continue to do the best that we can.

My Ma is in a home but it's only been 3 months and I'm battling the lack of communication every day.
The staff are good and I fear when they are not.
So many little things that I let go and others that are just frustrating.
Just yesterday I spoke to her key carer. I asked her why Ma was wearing these mesh pants which basically had her exposed. (they are used to put pads on - but there were no pads). The key carer said - oh the night crew can't find her underwear.
She was soiling her trousers and chairs and I have her padded pants especially for that. I had to find out the hard way.
I have all the drawers and cupboards labeled. I mean, they are LABELED!!!
So I put a notice in Ma's room in large writing pointing to where the underwear is!

But I have now MORE purchased disposable ones and will replenish as needed.

There's so many "incidents" and I fear overreacting as well, and someone on here said that I find fault with everything pertaining to care for my Ma. And I do as I am protective of her and want to keep her safe. And I'm not ashamed of it.

Documenting all the incidents and sending it to the manager is best, I think too.
Picking your battles (I know 😭 ) is also important.

Like you I am alone and the thought of changing care homes makes me want to jump off a bridge. I know exactly how you feel.

For me - is she safe? Is she fed? Is she with company? Is she safe? Is she safe?
And yes - she is.

Wish you all the best of luck and sending you hugs. And please, update on here as to how things are working out. 🤗

 

[JHA]

@Toopie28 thank you so much for your kind words she is safe and that is the main reason as to why she is in the care home.

I think they now know that I am not happy with her care over the last few weeks and things will improve. I do plan to see what else is out there but I will not be rushing into anything.

Sorry things were not good with your mom's care yesterday it is heartbreaking at times - I have what I call my brick wall which unfortunately fell down this week - its been repaired until the next time.

Take care and enjoy your Sunday.