My aunt was diagnosed with Parkinsons disease in the middle of lockdown. She got out of hospital without any care providers or support.
After arranging 2 carers per day, her health declined very quickly. She can’t walk, get in and out of a chair without help and is incontinent.
Her anxiety levels were high but we put it down to her being desperate to get into a home.
I arranged all of this. She begged us to put her in and I did this as soon as possible. We thought the anxiety levels would go down but now that she’s in the home, she is begging to get home.
We keep trying to reassure her that she is safe but she is literally abusing me and family members. She is phoning us all between 5-20 times per day. We are at out wits end as we don’t know what to do.
Her behaviour is erratic and the care home phoned me after 3 weeks to ask if the family would take her home as she wanted to go home.
The home are well aware of the effort it took to get her in there. I have asked them to get a psychiatric assessment done on her and get the doctor to give her something for her anxiety.
The whole situation is affecting my own health. I can’t sleep or eat properly and my stomach churns when the phone goes.
I don’t understand how it can even be an option for her to go home. She had so many falls and clearly her mental health is deteriorating quickly. It may be due to the Parkinsons or another underlying illness but we don’t know yet.
I am terrified that she somehow is going to be sent home because that’s what she wants. Not only is she a high risk of falling but there is noone to look after her. Half the family have stayed away because she is saying horrible things to them and is so ungrateful for anything you do but I recognise how ill the effort of getting her into the home in the first place made me, so the thought of her coming home again fills me with horror. Is it possible that a care home will allow someone to return to her home because she doesn’t like where she is? I know she’ll be home a day and want back out again.
What phone is she using??
For the sake of your own sanity you and the rest of the family must block the number.
Dementia, especially Lewy Bodies, often develops as a result of Parkinson’s.
She has her own personal mobile phone. We asked the home to take it off of her or limit her access but they said they can’t do it!
Then block her number.
Tell her you will ring every day at 7pm, or whenever suits you, if you want to, but you must take control of this.
It’s the dementia causing havoc. She NEEDS 24/7 care.
Anne
My husband had vascular dementia and other complex issues. He was hospitalised, and starting making the most abusive phone calls to me, and phoning members of my family in the early hours, demanding to be taken home. It nearly broke me, so I sneakily took the battery out of his mobile. I loved my husband very much, and he did me, would never have made such vile accusations. It was the dementia and delirium. We had been married over 48 years at the time. Have you asked if your Aunt may have delirium?
I know you can’t visit at the moment, so as Bowlingbun wisely advices, do block her number. For your own sanity. If and when you choose to contact her, cut the call short if abuse starts. It’s sounds cruel I know, and I hated myself for what I had to do. I needed to be able to function for all that needed to be sorted, not have a breakdown. You need to function too, and too take care of yourself.
Hello Anne, welcome to the forum.
Sorry to hear about the situation with your Aunt, it sounds very stressful. Hopefully the care home will be able to undertake the assessment you asked for and give appropriate care.
Parkinson’s UK has information and support pages here:
It’s important to think about your own well being too and try and have time when you’re focusing on something for yourself:
Best wishes
Jane
Thank you so much. I spoke to the care home again today and they are going to see what they can do about the phone. I think I will have to block her number in the meantime as it’s too much. I agree that I need to set boundaries and hope that the psychiatric nurse can diagnose what is wrong. I’ve never felt so sad or guilty about anything in my life but this is having such a negative effect on every aspect of my life that I know I need to protect myself. Thanks again for sharing your experiences with me. It means a lot and you have been very helpful. Take care and stay safe x
I had to put my answer phone on permanently after mum was widowed. We ran a business from home. A crucial part of this was me writing a quarterly magazine, 20 sides of A4 about vintage lorries! I needed to be totally focussed, but mum would ring me for a chat in the middle of something and I’d completely lose my chain of thought! No thought that a chat for an hour might mean me catching up late at night to meet a print deadline.
The answer phone was the only way I could work and earn a living for us. Dad was a senior civil servant, mum had last worked about 1950 and her civil service pension was very good indeed.