My Mum is in a really lovely care home. But every time we call she says she wants to go back to her flat. She cries and shouts and says she would rather die than stay locked away. She says the only person she can talk to about it is me.
I am actually getting sick from this and finally today I told her Mum I can't do anything about it and 'hearing you cry makes me cry and I am ill at the moment, so can we please talk about something else.' She said she was sorry but then started again two seconds later. It is as if she is on a loop.
She is so blessed to have enough money to stay in a nice place where they feed and care for her. Apparently she refused bathing help until yesterday and now she is starting to allow it. She says she needs to talk to me about how awful it all is, that I am the only one who will listen. I am also the only one who takes it in to my soul and my body and who is being paralysed by this because I don't know what else to do. If she went back to her flat, she would complain about that too and would be much harder to manage as she would probably fire any helper several times a day, then collapse as she did before.
She also talks to friends and says my brothers and I never call, which is not true as we call every day. She says she is shut in her room all day, which is also not true.
I am not sure how to manage my own anxiety. I get anxiety pings whenever I contact her or hear from one of my brothers by email about her, which is every day. They are really sweet men who are more upset than they are letting on.
Calling my Mum is something I am coming to dread as she won't talk about anything but wanting to get out or wanting to die if she has to stay there.
My brother is, on the outside, tough. He says he won't discuss her leaving with her. Inside I know he is vulnerable too. We are all adopted - we had a happy adoptive family and our Dad died in May. She is missing him but refuses to read any grief lit. I know it helps as I lost my fiance to Covid two years ago.
I really do feel for her but I am beginning to think it is not her old apartment she is longing for, but her old life and independence, which, sadly, has gone as she has both Alzheimers and dementia, although I am not sure how advanced they are. I do wonder if they are more advanced than I realized and if this sort of behaviour is typical? Or if we are just wrong in wanting to keep her safe in this residential home.
She has always been in control of her life. Now she forgets even the names of the people who visited her an hour ago. She becomes rude and aggressive with us - her kids - although the care home staff say she is adjusting and doing well.
What is the best way to manage my own anxiety? She is 91 and in England. I live in the United States. I am a single Mom supporting two kids without the financial resources to keep going over to the UK. I went four times last year to see her and my Dad, who died in May. I am afraid of becoming iller.
This is my second post and you all were so helpful the first time I thought I would post again. With deep thanks,
You are not failing. You have done the most excellent thing by making sure she is safe and cared for, whether she sees it that way or not.
You cannot control how she thinks or feels. I would advise you to work on controlling how YOU think and feel. And first of all please realize you (and your sibs) are not at fault and you're not responsible for her dementia and unhappiness.
You are not at fault. They are not at fault.
It is wonderful your mom is starting to allow baths. Let the caregivers work with her and take a step back.
She has Alzheimers, so you can't believe what she says. The mom you knew is gone, sadly, and this is someone else.
You simply can't take to heart what someone who is not in her right mind says. You're reacting as though the things she says are true, when the staff is telling you otherwise. You know deep inside not to believe and absorb all this.
If you had childien, did you give in to their every tantrum? Did you believe every fall was a life-threatening emergency?
Of course not.
This is the same thing here. Mom's wiring is short-circuited, so you need to react as you would to a toddler with soothing words, then distractions. Simply change the subject -- don't ask if you can, just do it.
If Mom is still able to write, get her a journal and tell her to write down how she feels, so she can off-load it when you aren't there to listen. It might prove to be illuminating if you tell her to write in it each day and tell about her day. It'll likely be all over the place, and that might help you understand better how her mind isn't working anymore.
I suggest you read this 33 page booklet (a free download) which has THE best information ever about managing dementia and what to expect with an elder who's been diagnosed with it.
Understanding the Dementia Experience, by Jennifer Ghent-Fuller
https://www.smashwords.com/books/view/210580
Jennifer is a nurse who worked for many years as an educator and counsellor for people with dementia and their families, as well as others in caring roles. She addresses the emotional and grief issues in the contexts in which they arise for families living with dementia. The reviews for her books are phenomenal b/c they are written in plain English & very easy to read/understand. Her writings have been VERY helpful for me.
The full copy of her book is available here:
https://www.amazon.com/Thoughtful-Dementia-Care-Understanding-Experience/dp/B09WN439CC/ref=sr_1_2?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468364&sprefix=jennifer+ghent%2Caps%2C631&sr=8-2
She also has published a workbook entitled, “It Isn’t Common Sense: Interacting with People Who Have Memory Loss Due to Dementia.”
https://www.amazon.com/Isnt-Common-Sense-Interacting-Dementia/dp/1481995995/ref=sr_1_4?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468655&sprefix=jennifer+ghent%2Caps%2C631&sr=8-4
Here is a list of useful tips from her e-book I found to be excellent:
The “Dont's”
· Do not reason and argue
· Do not demand that they reason or problem-solve
· Do not demand that they remember
· Do not demand that they get their facts straight
· Do not correct their ideas or scold them
· Do not reorient them
· Do not think that they are being uncooperative on purpose
· Do not think that they really do remember, but are pretending not to
· Do not use a “bossy” dictatorial attitude in care
· Do not act with impatience
The Do's
· Enter into their frame of reality, or their 'world'
· Be aware of their mood or state of mind
· Use few words and simple phrases
· OR use no words, just friendly gestures and simple motions
· Do everything slowly
· Approach from the front
· Wait for a slow response
· Constantly reassure them that everything is 'OK'
· Keep people with dementia comfortable 'in the moment' - every moment
· Maximize use of remaining abilities
· Limit TV or radio programs which they may feel are frighteningly real
· Maintain privacy
· Provide a safe physical environment
Language Needs
· Use short words
· Use clear and simple sentences
· Speak slowly and calmly
· Questions should ask for a “yes” or “no” answer
· Talk about one thing at a time
· Talk about concrete things; not abstract ideas
· Use common phrases
· Always say what you are doing
· If they repeat their question, repeat your answer as you did the first time · Give them a longer time to process information
· Wait patiently for a response
· Be accepting of inappropriate answers and nonsense words
· Speak softly, soothingly and gently
Wishing you the best of luck with a difficult situation.
If your Mum was in her right mind you know darn well that she would not want you getting so stressed because of her, so it's time to take a step(or 2 or 3)back and start limiting your calls as they're not doing you(or her)any good only causing you harm.
Your Mum would want you to take care of yourself, so please start doing that.
Allowing baths is huge.
Have YOU spoken to the social worker at the home? Perhaps s/he will have some suggestions.
Often we are told to stay away during the adjustment period, but you are already doing that, not by choice.
I would take a firm, authoritative tone with mom. "You are where you need to be right now, mom. I can't do anything about that."
Do you have someone to talk to about your anxiety?
Becomimg anxious every time the phone rings when you have an elderly parent is pretty common. I certainly had it. Talking to a therapist DOES help.