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,
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.
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.
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.
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.
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.
From where I sit, you have two choices: move back to be closer to you Mum which will be hard on you and your family or stay here and learn how to cope with your anxiety. You might consider seeing a doctor. Antidepressants might help you better handle your response to this situation.
I hope you feel better soon.
Triage here is sometimes just to limit your exposure. The constant reminders and contact are panic-inducing (I get that, my pulse jumps every time my father's facility calls), so do you NEED the constant reminders? Can you cut back on contact with her and contact ABOUT her, temporarily? Maybe set boundaries with your siblings: you'll email/talk twice a week about Mom's care, rather than constant back and forth.
And set boundaries with your mom, too: you and your siblings are calling every day? If she's getting several calls each day, it would give her a lot of time to complain and think about complaining, wouldn't it, rather than time to adjust to the rhythm of the new place? Perhaps have a rotation with your siblings: one of you calls Mom each day, or even every other day. And be immune to her "you never call" complaints, even if you cut back, because sense of time is very wonky with AD/dementia - if they are advanced, she may start forgetting who she talked to that day, so it will ALWAYS seem like you "never" call. And encourage your brothers to set these boundaries, as well. Working as a unit will help one of you from getting burnt out.
Also, you're doing the right thing in setting boundaries about what you talk about: but stick to them. Tell her you don't want to talk about that, and redirect her as many times as you can stand, and if she doesn't/can't get off that "loop", then tell her, "sorry, I just can't talk about this, Mom. Either we can talk about something else, or I need to hang up." And then do it. This may or may not modify her behavior, depending on her condition, but it will protect YOU. Just because she "needs" to complain to you doesn't mean it's good for her, helpful, or right for her to do to you. She can choose to complain. You can choose to set boundaries and not listen. That's your right.
You deserve to take care of yourself. You deserve time for yourself. Make space so you can do that, and good luck.
I am sure you didn't put your mom away because you got a coupon in the mail and thought you would give it a try (like a new pizza parlor in the neighborhood). I am sure you took time to deliberate, consider and evaluate the situation to come up with the best solution for your mother. Remind yourself what those were and why the choice was smart, and create resolve for yourself around the choice.
Look yourself in the mirror and remind yourself of your love, courage, and compassion for your mom. (PRO TIP: Stand in front of a mirror and look at yourself until you can look at yourself for a full two minutes without looking away. While you are looking at yourself, look for your soul, your beauty, and your compassion. I promise you had it as a child, the mirror is waiting for you to find it again.) You can even be proud of yourself - I'm sure you had a suspicion it may not be easy for your mom at first, and you were right! (laugh now!)
I can pretty much promise you, Mom will get settled and start to see the advantages you saw when you moved her. It sounds like she already is... Be patient with her and just listen... because really... that's all she wants is someone to listen. You can ask her what she needs or missed about her flat, then ship it to her. Send her a small gift or ask the staff to bring her a special treat. You can facetime with her, send her pictures of the grandchildren, or encourage her to try a new hobby. (Try rock tumbling - seniors love it and it gives them something to look forward to and enjoy.)
And, give yourself some respite. Make up a little white lie (she did it to you - Santa Claus, the tooth fairy, pay your taxes) and let her know you won't be able to check in for a few days. Ask her if that's okay and make sure she understands. That will give her peace of mind.
Now, just breathe..... you're allowed and you deserve it!
I am not a professional, so nothing I am saying is the truth, but I would give your mom another week or so and see how it's going for her. I would bet she's adjusting and will continue to adapt. If she doesn't, talk to her doctor about a psych evaluation and a prescription for something that would make a difference in her anxiety and relaxation. She's been through a lot (more than you) and sometimes a little extra help to cope can make all the difference in the world for her. (PRO TIP: Confirm her current meds are correct and being administered properly in the new facility. A miscommunication or bad medication management could be fueling the upset and anxiety.)
I hope that made a difference. I would love to hear your feedback. ~BRAD
If her care home is saying that she's acclimating well (and there's an outside trusted person who you trust that also confirms this) then take them at their word.
It could very well be that she's doing great in her new place and enjoying life but like so many of our elderly "loved ones" will turn on the Magical Misery Tour when their adult children call or visit.
Of course she misses her old life when she was still in charge or when she was young. She also misses the people in her life who have gone. No one wants to be old. Don't expect her to get into any literature or grief therapy about losing your father. She is from a generation that did not go for that sort of thing. She also has dementia and Alzheimer's like you've said.
The next time you talk to her and she starts with the complaining and lashing out, try to distract her away from it. If that doesn't work tell her you're not interested in listening to her complaining and nonsense then end the call and try again at a different time.
The best advice people gave me is that everyone goes through this, and that the move to a facility is very difficult on everyone involved. Our parent is also coming face to face with their mortality, if not for the first time, in a way that is far more real and imminent than ever before. This is the last stop and they know it. There is no point sugar-coating or denying it. But there’s no reason it can’t be a good experience. I tell my mom that she did an amazing job for 90 years being independent, doing all her own shopping, managing her bills, hiring contractors, etc. but wouldn’t it be nice to let go of all the obligations and just enjoy life for once? Yes, it’s brutal and heartwrenching when she talks about her life being over and now it’s just a struggle to stay alive. It hurt deeply when we attended a piano concert at assisted living and I saw her quietly cry during “I’ll be Home for Christmas”. I am as supportive as possible, but don’t want to indulge her either, so am quick to remind her of why she is there and why this is best. I’ve explained in great detail what staying “at home” would look like: 5-7 caregivers coming in and out of her home all week, a long vetting process as we figured out which strangers (which they would be in the beginning) were working out and which were not, the need for meals being made every day, the weekly food shopping, and the fact that she would STILL be sitting at home every day watching tv with little interaction with others. I know she would hate this lifestyle. She does fundamentally understand all this and agree that it was time. But she is grieving, and so am I. We have to go through this.
It is so much more difficult for you being so far away. My mom is scared right now and clinging to me. I’m sure your mom is scared too, and you’re not there. That’s hard for her. But your life matters too, and you need to remember that.
They get very self-absorbed at this point and I believe it helps to put some perspective on it - we are going through this with them; we are also stressed, scared, grieving, and depressed. Find a physical outlet for yourself asap: walking, yoga, dancing, etc. It is such a healthy release of all the emotions and will help you sleep. Be kind to yourself. Find God if you don’t already have a relationship with Him. Tell your mom how hard it is for you, tell her you are hurting too. And remember that your life matters and must be nurtured too. We can only do so much for another person. And if we are not well, we can’t help anyone.
If you require any affirmation of your experience, research 'relocation trauma' for the elderly. A good adjustment takes 3-5 months!
Keep reminding yourself you did the right thing - and all the problems you would be dealing with if she was still at home.
Finally - my doctor just had me start ashwagandha for anxiety. I started it a couple of weeks ago and it's been a real game changer.
Glad you're seeing Functional Medicine MD!
I was on Ashwa too, a common herb used by Lymies. It helps to lower cortisol, a key stress hormone. I'm glad that it's working for you, did for me too!
She wasn't in a facility, in her own apt adjacent to YB's home and she was always aware of how lucky she was to have a big family right there and some of her kids coming by at times.
She, unfortunately, was one of my worst 'triggers' for my PTSD, and so I had to manage and limit my time with her. Sounds so selfish, I know, but by the end of her life, in August, I was able to not be upset after every visit. We were on 'good enough' terms when she passed.
I had the power to visit or not. So do you. Even with dementia, you can control the amount of time spent with a LO. I found it sad, mostly, but sometimes she'd get me so wound up I would cry the whole drive home. I could, and did go 9 months or more with no contact. She didn't even notice. THAT really hurt, but it also made me aware I was simply a target to shoot at when she was angry.
I learned that I was the one in control of the relationship. Once I embraced that, fully, visits were better and I could and would walk out if she got, well, kooky is the only word that applies. I quit trying to argue with her or make any changes for her life. Only then did I have relative peace with her.
I've been there myself years ago with my mother and got an LCSW to help me and also to find work when unemployed.
I think your daily calls are important, if they work for your schedule. For both you and her. It is great that you get the scoop from the facility, as well, so you can have peace of mind. You might think about coordinating a once a week zoom or skype call, if possible. Or facetime? Send her mail 1-2x a week. Maybe your kids can write, draw or send something. Or they can say hi on the phone to give her a lift. Have flowers or favorite goodies sent to her. Or send homemade or bought goodies yourself. Does she have friends or church members near that can visit? Volunteers? Anything that can add joy to her life.
You have your plate extremely full being a single Mom. Recruit some of the above from family. Assure your family that the facility has given good reports, regardless of your Mom's complaints and stress through this naturally tough time, and leave it at that. She is bending any ear that will listen. Encourage them to go visit or do video visits to see for themselves. Have them send mail etc.
Balance your life with something you love. You do so much for others. Daily or 1x week. I used to visit my horse 1x week to balance all week caring for my Mom. It was a reset for me.
Bless you during this tough time, as you find those peace giving solutions!
Your sharing all you did, helps me. Your Mom is fine. YOU need to be good to YOU! I am big on daily walks & workouts. Work to tune out feeling guilty..
I was on the phone yesterday eve w/my Mom, but in store buying a bottle of wine. She had no idea.. I was laughing inside.. I was walking around the market admiring all of the beautiful Christmas decorations as she was complaining on a low volume.
I LOVVEE all the fabulous advice-support under your post here..
Though, I don't have it in me to be my Mom's 100% Caregiver (she lives 2 hrs away) & I don't have it in me to operate with ways "lealonnie1" wrote about... but I do my best: Keep convos short--share with her important national-world news. I am beyond sick & tired & bored of the same old-same old convo. I get sick of her telling me my Dad is upstairs or that my Niece and her Son are there...or she doesn't know where they are. She makes sure I hear her say this, but I talk over. She couldn't see him for 2.5 mos before he passed. She wouldn't let him pass in their home. She was a beast and he was a Saint. I tell her my Dad is in spirit form and everywhere. I tell her maybe Santa is upstairs. Maybe the elves forgot to unload the dishwasher.. When my Mom becomes more fragile we will make a change. She's too disagreeable & mean spirited.. Purgatory ..
My Mom has financial means, but never became grounded within herself. YOUR job is to carry on & be the BEST you can be for yourself & your Kids & future generations.. Hope you you feel better soon! Your health is #1! Do not let your Mom rob you of this!!! Your Kids need YOU!
Have a cup of Christmas tea & catch a nap today!
Nailed it.
Your mother sounds like mine.
My mother is 95 and lives with me and is not satisfied. She wants to go "home" which is her childhood home. She wants her mother who has been dead for 32 years.
I suppose that there are gentle spirited, sweet and contented elders out there, but I don't have one.
You and your brothers sound like lovely people and your mother is blessed to have you all being so attentive.
Would you consider moving Mom to a facility near you? If she can afford self-pay, then you can keep the government out of her business. Not sure if Medicaid is possible for a transplanted person and if it requires a specific visa that addresses her medical needs, unless England would pick up the tab for a citizen of theirs.
Have you read about "Sundowners Syndrome? It's where the patient will turn on the charm for non-related people: on and off like a light switch. All patients are not the same, just like their relatives are not the same. It's an incurable disease that ruins a person's quality of life. What we have to do as the emotionally caring loved ones, is to learn how to cope and what medications can assuage the symptoms (including fear, anxiety, anger and frustration on their parts, as well as dealing with all the feelings and coping responses on our parts): seeking out help with caregiving and medications can make relationships better.
KEY BEHAVIOR FOR YOU:
- Do not argue; this feeds the negative loop.
- Learn that you must step back and learn when.
- Learn reflective listening (I hear you saying XXX) and stop. No explanations.
* The non-stop record of "I want to go home" is just that: non-stop. It is expressing frustration and fear of the unknown. And, yes, it is exhausting to hear this over and over again. This may be the time you take a break and leave for a few minutes . . .
* Managing your own anxiety, I can attest, may not be easy.
- It takes a commitment on your part.
- A 'stopping' to feel and just be --- observe what is going on inside you and acknowledge it. You do not need to do anything except be present with however you feel. I sense ANXIETY as "telling me I need to be doing something" when the opposite is true. I need to chill - stop - sit down and focus on my breath.
Somehow you want to interrupt the loop of a negative pattern of behavior. It starts with awareness. And stopping the cycle 'in flight' and knowing that you can do this. Try it. You can. And, so can I (!) Gena / Touch Matters
It took forever to find a suitable nursing home and we moved her in on a Tuesday and she died on the following Thursday. She hated it but due to non compliance with exercise and dementia she became bedridden. She had to physically be transferred to her wheelchair. She wanted to go back to her apartment and could not understand there was no money to pay for more caregivers. A very sad situation.
Nothing will please your mom. It must be horrible for you living in another country. I suggest not calling everyday. Give her time to adjust to the care home and her new caregivers. You really have no options. My mom's care staff said she was so sweet but horrible to me and my sister.
If your health is an issue you need to take care of yourself so you can provide for your children.
Don’t hesitate to speak with a licensed professional therapist. Your mom is grieving for her old life but we as children also grieve that our parents aren’t who they once were. Therapists specialize in healing.
Wishing you peace as you move forward during this difficult time in your caregiving journey. I am glad that you are able to find comfort in knowing that your mom is exactly where she needs to be.
My Mom drove me crazy for the first few months in-care, a decent facility with lots of activities, but a few staff people who I knew to be sub-par (retired RN here and quite hard to impress). It's 90 miles distant and I was unable to visit more than 1-2 xs weekly and take her out and about. Covid restrictions were in place early on.
She was on that constant loop also and would act as though she was unable to describe what was troubling her in that moment, it would be that she's 'been stuck in her room all day' or 'lonely, without anything to do' and 'unable to go outside.' Always vague and actually feigning deeper dementia than she was then experiencing.
Because we'd always been so very close and I was guilt-ridden over not bringing her home, I believed her and got caught up in endless discussions about solutions like activities, reading, etc. It truly took me about 3 months to realize that she was manipulating me and when I'd talk to staff, I was informed specifically about the activities she'd been to, time spent in the courtyard, who she was chatting with, and etc. I called her out on it without much success (easy to pretend to forget) and hard to pin it down!
I eventually had her moved to the MC unit where she has now established some solid relationships with a few staff members. She completely denies this and of course, 2 yrs out now, her dementia is quite advanced and I can no longer gather any reliable info from her.
We still talk daily and I'm ok with the stress level, but will decrease our contact when I need to. I've another grandchild on the way.
Dementia and guilt make for a difficult dance and I do not envy your position.
I'd strongly advise that you find out exactly what your mother is doing, how she fills her time. See what you can do to get her more involved at the facility. One suggestion is to check the state laws on in-room cameras and place one to keep a closer eye on her doings.
You have to stop calling her and just tell her that it hurts you and you don't blame this hurt on her, it's jut how life is. Reduce your calls to her to once weekly, max, and speak with the social worker, nurse manager, activities director, anyone but your mom to find out what she's actually doing between calls and to check in on her. It may very well be that she's adjusting just fine (a 'good' adjustment requires 3months minimum) and her dementia has her pulling your heart strings - because she can.
Step back from the dance of dementia, that way lies madness and anxiety beyond measure.
Just realize you are doing the best you can under the circumstances.
Everyone says, take care of you. What does that mean? I also have a 40 year old son with a disability that I need to make sure is ok in his group home.
I am on meds for anxiety but I have been doing yoga for many years and I find it extremely helpful. I used to go to a studio but after Covid I just do it at home with YouTube videos. Maybe give it a try. Lots of beginner free YouTube videos. I’m so sorry about your fiancé. Take care.