Our story - Mum and us!

[annieOops]

My mother was diagnosed with Parkinson’s about 12 years ago but was showing symptoms for probably a good 10 years prior to her diagnosis. My Dad cared for her throughout and as the illness progressed she totally relied on him for all her needs, apart from the toilet as she was very proud. He was not it good health having had a triple heart bypass about 10 years ago and then further heart problems in recent years. Unfortunately he would not hear of getting help from carers in the home apart from a weekly cleaner. Mum got more and more demanding and when my Dad had any time spent in hospital with his heart problems, I honestly think he enjoyed the rest!

He was diagnosed with lung cancer in September last year and even coming home after his biopsy Mum’s demands were relentless. The very sad thing is that in early December when he was told he only had a couple of months to live he was eager to go into hospital just to get away. He loved my mother so very much and it broke our hearts to hear him speak of her so badly. He was disgusted by the way she looked, the way she slept, the way she ate, the way their bathroom smelt of her incontinence pads - just everything!! People, try your hardest to get help for your loved ones when they really need it.

Dad went into end of life care just before Christmas and the family rallied round the best we could to try and look after Mum. We realised she needed 24 hour care which was difficult as we all work full time. We tried to find carers for her which proved impossible, no-one wanted to take this on just before Christmas so we shared the caring between friends and family, which just was not sustainable.

Mum was unable to get out of the house to visit Dad as she found getting in and out of cars more than challenging. We managed to get Dad home for a couple of hours on Boxing Day which was a good thing for both of them and the last time Mum saw him. He died on 3rd January 2022.

Sadly the only way we could ensure Mum was safe and well looked after was to move her into a nursing home. At the end of December we secured a place for her in probably the best home in the area, not cheap by any means, but a lovely place. We don’t underestimate how tough this time was for Mum as within a week of moving in we lost Dad and then the next day she got Covid. She is also deaf and lip reads which made it incredibly difficult being looked after by people she didn’t know who were all wearing masks, and of course we couldn’t visit.

She got through Covid with no ill effects and was moved to her permanent room, identified as needing nursing care, but incredibly unhappy, understandably. She has other health issues which are far too many to mention and has become increasingly frail over the last 8 months. She is now unable to see to her own intimate needs, she requires help in feeding herself as she has constrictor of the fingers in both hands and is only able to use her arthritic thumb and forefinger of each hand.

We feel she is being well cared for, but her deterioration is quite shocking. She will not leave her room and join in any of the activities in the home or even go to the dining room as she is ashamed of the way she eats. She has had several falls whilst in the home and as her skin is paper thin she is bruised and cut. The home have installed a pressure mat on her chair so they are alerted if she tries to move around the room.

Mum also has delusions and hallucinations now, some are quite bizarre and some worrying. She feels that some staff in the home are abusing her, she needs extremely delicate handling so I personally think that, especially agency staff who may not know her so well, some carers may treat her the same way as other residents which is not gentle enough for Mum. But should we worry? Is something actually going on which we are not addressing?

My sister and I visit frequently and feel guilty she is where she is and concerned about the things she says but have no idea how to handle it.

So that is where we are, any comments that would help would be much appreciated.

Thanks for listening!

Ann

[JaniceP]

Hi and welcome to our forum @annieOops. You’ll find everyone here very friendly and supportive and I’m sure they’ll be along to chat with you soon.

What a heartbreaking journey you’ve all been through. I can’t imagine how rough it’s been for you. This current situation sounds very worrying, especially when you really aren’t sure what’s going on, what’s true and what’s not. Have you spoken to your mum’s doctor or specialist about these concerns? Have you also had an opportunity to talk to the staff about your mum’s needs and the issues she’s bringing up with you? It’s hard to say for sure and worrying about it seems a perfectly natural thing to be doing. If you search on this forum for ‘Care home’ you’ll also find past topics that could shed some light. Just in case, there are some tips on managing delusions here.

You might also consider going to Age UK with your concerns. They may have ideas for you. As well, our helpline advisers are there to support you and offer advice on where you might turn for answers. I’d encourage you to call them on 0808 800 0303.

Take care
Janice
Forum Moderation Team

[Littlenanny]

Hi Ann
I was very saddened to read your post and how difficult things are for you all.
I have PD but I also work in social care, the one thing I would suggest is contacting your local carers support service you will find them on your local council website or carers UK who have lots of information for both the PWP and their family etc….
Good luck
Little nanny

[Tot]

Hello annieOops

The advice given by JaniceP and Littlenanny is sound and I hope will. help you get the ball rolling to set your mind at rest that your mother is getting the best care. .

I wanted to take a slightly different line if I may and that is to tell you your post is extremely impressive. You and your sister have been and still are going through a hugely complex, difficult and probably emotionally draining time. I doubt you’ve had time to properly grieve for your father and I don’t know your circumstances but in some way or another you will need to continue to manage your own lives. Yet what comes through in your post is that despite everything you are managing to maintain an even handedness which is not easy to achieve. By that I mean you and your sister feel your mother is being well cared for whilst accepting your mother’s view that she is being abused,. You acknowledge that your mother’s fragile skin will bruise easily. but don’t immediately start shouting abuse, recognising there may be a staff training issue for example, that sort of thing… In your post you wrote ‘My sister and I visit frequently and feel guilty she is where she is and concerned about the things she says but have no idea how to handle it.’ The guilt generally comes with the territory and there is little I can say that will alleviate that, other than to say you recognised she needed more than you or your sister could give and were brave enough to take that toughest of tough decisions. You really do not have anything to feel guilty about.

As to what you can do, you do of course need to establish whether there is any truth to your mother’s claims or whether the views of you and your sister is more accurate. It is not clear to me in reading your post, how much you have discussed your concerns with the Home but it seems to me that is where you need to start. They are not mind readers and you must bring any issues, however big or small., to their attention so that it can be properly addressed. I suggest you get a notebook or some kind of binder to keep a record of who you spoke to, when, what action was agreed and so on; not necessarily because there is anything untoward going on but rather to help you identify any questions, clarification etc that may be needed or simply to refresh your memory as to the chronological order of events. If you find that something is amiss at the home such a record could prove invaluable to any investigation.

I entirely understand how shocking it must be to see the apparent speed of your mother’s deterioration but it is difficult to comment much on this. It may be simply the way her Parkinson’s is affecting her now, maybe there’s an element of not rea,l.ly understanding where she is or why or why she is not at home with her husband. You will need to be guided by the doctors on that but never be afraid to question something that you are not sure about or don’t understand.

You and your sister are clearly very caring and all your decisions have been with the best interests of your Mum and Dad… I feel sure that if they were able, they would be extremely proud of you both.

My very best wishes to you all.

Tot