My mom has been in AL less than 2 weeks. I can hardly take her anxiety levels anymore. I’ve put my life on hold to be her caretaker, ever since dad declined and was hospitalized in 2020. Actually I was caretaker for both, although he died in LTC after 10 months hospice. She’s been riddled with anxiety and mental problems ALL my life. After dad died I heavily tweaked her world to care and keep her healthy and entertained while living at home. She’s been thoroughly evaluated medically and she’s not physically handicapped and scores high cognitively. She is manipulative and emotionally draining. At the start of July she began dialing 911 all the time. She didn’t want whoever stayed with her to sleep or to leave (she dials 911 immediately when you leave). She loudly howls “help me!” in the middle of night and wakes you up, then says she doesn’t know what’s wrong. After 2 hospitalizations and 2 different rehabs within the last 4 months she’s now in AL and the nursing director is not sure they can meet her demands. She said, “Your mom knows how to play the victim and I’ve had to tell staff to set boundaries.” She wants to be pushed everywhere in a wheelchair even though she walks just fine, she says she can’t.
Anyway, today PT called me to say they met mom and their recommendation is that I should be more "supportive" of her because my distancing is giving her anxiety. lol I’ve been supportive ALL MY LIFE. I listened and thought, “How do I start to explain ALL I’ve done to be supportive of her? What about me?” and I kind of felt like I couldn’t breathe when they said that. Has anyone else been told such a thing by “professionals”? I mean, I’ve gotten that type of disregard from a tiny handful of friends & family over the years who just want to stay in their fairytales about what this kind of caregiving takes out of you. I just want to hear how you got over advice like that from the “medical world”.
if they are paid to care for her then she is getting care and it is their responsibility.
I also grew up with a mother like that and she continued to her last day with manipulation.
take your break from her. Inform he place staff that you have been called away for important reasons or you need a surgery or something.
then trust that she is in a care facility and she is not the first person they had to handle like her. You can just agree she is a handful but you aren’t her parent and have no blame for how she acts. She is an adult. This is her choices. She now has to see her consequences for acting like that.
I would discuss this issue with the facility because that is very hurtful and inappropriate thing to tell a family member when they have no idea of the whole story. Nor is a PT person trained in this kind of issue and should not have inserted themselves. Hopefully PT will not do this again to you or anyone else.
Also if someone did this to me I would keep them on the phone for an hour. Start the conversation with “Well let me tell you about the last two years…” They won’t call again!
Another agency is now providing PT, thank goodness! And my mom also seems calmer and easier for me to be around her, with her new meds. 🤞
Your mom is safe. She is receiving care. You have done your best for her.
Give yourself permission to do your best for YOU.
If you miss her, visit. If she is nasty, leave. If you have fun, visit again.
Stop letting this hurt you. You have hurt enough. It is your turn to be happy from now on.
I just have to hang on to this type of interaction (for my sanity) and if it’s the meds helping her be less anxious and obnoxious, then so be it.
Secondly, I'd tell your mom that every time she plays the victim, etc., you'll visit her less than you already do. You've put in your time, you're not her mother, she's not a child. She sounds completely manipulative to me. Her anxiety is not yours to cure. You can't. You lack the superpower. So all that bull---- about needing help…tell her those actions have consequences and you've done all you can for her.
Then go take care of yourself.
Shes calmer now. I hope it’s the meds working. My fingers are crossed. I’m not jumping back into the deep end of the pool yet, I’m still devoting a lot more time to my own life (than I was doing). But I’ve been very encouraged by her calmness and gratitude lately.
yes the high cognitive score was from the hospital and the rehab.
One nurse I met (who got to know my mom at a facility she was in) told me she thought my mom might have become a homeless person if my dad had not married her, provided a life for her, and shielded her from the outside world. Idk, it kinda seemed true in a way. But I’m still puzzled.
I was ready to unsubscribe, since Mom has been gone two years, but I am having grief triggers now and I saw your post. My Mom was mentally ill too, but refused to see a therapist or psychiatrist, she would not take meds of any kind anyway. She even told me she had children only so she would be taken care of in old age. She was verbally abusive to everyone, but she hit me a lot too because I stood up to her and protected my sister. So I took care of her for 22 years after my Dad passed. She started with dementia at 92 and what a blessing it was for me, all the demons were gone, she was sweet and loving and appreciative. It made it easier when I had to care for her 24/7 I truly loved this new lady, and I forgave her and I buried the worst memories. I am praying that the mental illness could be managed for your Mom, so she can become a lovable lady and remain at the AL. Another reason for writing is about a PT at the hospital. When Mom was admitted in 2020, she had low sodium and she was unable to wake up, so they first told me she was just old. They treated her for a UTI even though the tests were negative and they continued to give her sodium because it kept dropping. After a few days the PT went to evaluate her and Mom felt good, she wanted to go home so she walked around the floor and even did a twirl. The PT lady called me and said we are discharging your mother, will she come to your home? I said no, I am not prepared to take her home because something else is wrong, she will not wake up and she will not eat when I am there in the evening. So this PT said abruptly, I am calling the State and I will get her released to them because you are abandoning her. Well I said fine do that because I do not have a safe place for her now. I cried my heart out the rest of the day because it was Covid and I knew I would never be able to visit Mom in a nursing home. Luckily our neighbor is an attorney and specializes in elder law, I told him it was Devine intervention that we recently moved next door. He contacted the hospital and got the discharge delayed. That evening Mom was talking and laughing with a CNA, she ate her dinner, so I made arrangements to take her home, I thought she was healthy again. But, the hospital
called in the morning to say we are not sending her home today, her sodium dropped very low overnight, so instead we are sending her for a CT scan. The doctors found a huge mass, pressing on the kidney, bladder, aorta, and intestines.
The size of a mango told them it was stage 4 cancer and at best she would live a couple of weeks without chemo, but thank goodness she told me and all of the doctors she was ready to go to heaven. It made my decision to take her home to die bearable. With the dementia she would not believe or remember that she had cancer. Needless to say, I was ready to report the horrible PT lady, but because it was at the worst of Covid, I decided to give her a warning. I said the next time you feel it necessary to threaten anyone, think of my Mom who is going home to die from cancer and think of how you made me feel for pushing back because I knew something else was wrong with her. What gives you a PT the license to speak to anyone that way. Being condescending and judgmental is not part of your job.
It helped me to write, as my dear friend is in ICU today ready to pass after learning she has stage 4 pancreatic cancer, only 15 days ago. No signs of illness until she got foot pain, then a blood clot in mid October and I have had anxiety attacks since.
I wish you the very best and I am praying for you too!
She HAS enjoyed the company of a man who’s a resident there. He’s a volunteer “buddy” and has taken a couple walks outside with her and gone to meals with her. He does have a reputation as a flirt and a ladies man. And he has definitely got dementia. I told her these things but she says he’s just trying to be friendly and has always been gentlemanly and she enjoys his company. She’s also taken to wearing my dads wedding ring together with her own wedding rings so I don’t think she’s trying to have a new boyfriend. But the staff say “Joe” has helped get her out of her apt. So that’s fine.
maybe her psychiatrist will recommend therapy??
I get all kinds of flack for living 3000 miles from my father with Alzheimer’s. I get lots of, “You are going to have to move home and care for him at some point.” My response is, “I don’t have to do anything that is going to ruin my own life. Nor would my father have wanted me too when he was in his right mind. When the time comes that he needs to be placed I will deal with it. In the meantime I manage his finances and what I can from where I am.”
Most likely in my father’s case there will be some event that triggers placement and I will have to fly back and deal with it then. In the meantime, I am not giving up my life to live with him and get sucked in to being a 24/7 caregiver to a father with dementia who can become aggressive and angry. He was always a difficult personality type and the frustration of the disease has made it worse. I love him dearly, he’s my dad, but I have one life to live and I have to choose me. Some people will have a problem with that. That can’t be my concern.
Save yourself.
It honestly is not their business, but do understand they are hearing your Mom's story and not yours. Throughout life we have the unwanted input of others in our actions. We have to learn to take and weigh what may be useful to us, and let the rest of the baggage sit as we move on.
I feel your pain because your mother is my mother to the letter. I remember taking her to a fill-in doctor when her primary ws on vacation (she's a hypochondriac. Going to doctor's appointments is her socialization). Well, he didn't know us and he really laid into me something fierce. Of course this was like Christmas and her birthday all wrapped into one for my mother. She was LOVING it. I told him that he doesn't know my mother or me. I had a lifetime of various forms of abuse, neglect, and pain from her which resulted in a serious eating disorder for many years and a whole lot of therapy. This lovely old grandmother sitting in front of him is lucky I even speak to her (and I didn't for six years), let alone be willing to help her out. Her other children can't be bothered. So really he should not make assumptions about my lack of compassion and empathy because he has no idea.
The doctor apologized and we went on our way. My mother of course was livid me because I ruined her day out.
You know what? There comes a point where we have to say ENOUGH! and NO MORE! when it comes to our "loved ones" and their anxiety and depression. If a person is not willing to help themselves and at least try treatment for their mental illness then you have to let them go. Your mother has no right to ruin your life with her anxiety and depression. She has no right to force you to be a player in her games. She's a professional victim.
Give her an ultimatum. Either she gets willing to get treatment for her depression and anxiety, or you will completely cut her out of your life.
My mother will work herself up into a panic/anxiety attack when she wants to engage in a bit of verbal abuse but gets ignored, or if she wants to fight but doesn't get one.
Know how I handle her panic/anxiety attacks? I ignore her even more and give her even less attention. Try it, my friend because it works. Tell your mother what I've told mine. If the anxiety and depression is so out of control that they cannot function on any level, 911 will be because I fear you will harm yourself. I did one call one time, so she knows I'm not bluffing. She always manages to get herself under control.
Your mother is already in AL. You don't have to take her calls. Tell them at the AL to call 911 if she's getting worked up. You don't have to deal with her.
I think, regarding the medical advice that you had received from the "medical world" - if you can just tell yourself that it was a really ignorant, insensitive and inexperienced and unaware comment provided to you - in fact, coming from someone from a medical community dealing with families of caregivers, they should really know better. Then, try to switch your thoughts...focus on something for yourself that makes you happy - even for a little bit - just to create a more lifted mindset for yourself.
Let's look at this rationally. I'm in physical therapy myself. My PT has never once asked about my "family support" or implied in any way that it's part of the process. My husband basically ignores what I'm doing. My cat stares at me as if I've lost my mind. ALL of the "support" comes from the PT.
I think you have to consider the source of this advice, which is--unqualified to make this type of judgment. Your reaction is quite understandable considering the trauma you've been through with this parent. Advising you to "be more supportive" is completely inappropriate under the circumstances but unfortunately, you can't prevent people from expressing inappropriate thoughts, you can only change your reaction to them. Hang in there, and do find a therapist of your own. You are doing it right!
My husband’s mother is the same - a mental and physical mess. She can walk but refuses to leave her room to participate in activities, is now accusing me of kidnapping her and putting her in AL when her son and nephew took her there, that I control her son and won’t let him visit when he was there last month checking on her, etc. I am tempted to tell him to tell her the next time he sees her that her granddaughter and I are dead.
I‘ve been the one after him to check on her when he would have consigned her to the state. She would otherwise have been in the state mental institution for calling 911 too often.
Your mother would probably have ended up there if she were still calling 911 all the time. The police don’t put up with that.
She perpetually thinks her dog is dying because it doesn’t defecate. She is confused because she thinks the poop is caught in the testicles. We had the visiting vet check the dog and it is fine. MIL continues to declare it will die any minute now.
I’ve asked my husband to reach out to the AL to have a regular dr check her out so we can get a referral to a neurologist so we can get her medication for her mental illness as well as the dementia. This can only help the poor little dog so he isn’t being checked over by her all the time.
It is best if you interact with your mother’s nurse and reduce your visits to a minimum. Tell the AL they are being paid for care.
We bless every day that we are not stressed by the assistance we receive from the AL, even if we have to ask for status regularly.
She wanted to live in my remodeled garage. The answer my husband gave her was that she wouldn’t be able to stand the rules of the household when in truth we both couldn’t have been able to live with her behavior nor would we have been able to get rid of her easily after her dog would have destroyed the building. We had our daughter move into the garage and told MIL that she could not live in it. She was angry but I told her that she hadn’t met the first requirement which was to put her dog to sleep or give it away.
My husband sent her a birthday card. The dementia and mental illness speaks and she doesn’t recognize that he recognized her birthday.
The best solution is for her to keep herself Company and for us to try to arrange for medical care to come to her and that she is safe.
I got annoyed when my mother's PT in rehab would sometimes let her call me so that she could go on a delusional rant that the rehab was trying to kill her.
Do you have POA/HCPOA?
See your own physician for needs, access appropriate support for yourself, for example a faith based clergy or counselor, a social worker or chaplain at the facility or in the community.
As for " advice" given from PT, you can give yourself permission to do with it what you want: ignore, speak with facility administration re the discipline's statement and the inappropriateness in your case etc etc.
Limit your visit frequency and length of visits with your mother as you wish. Shorter visits are often more quality visits. When your mother
" acts out" as you are describing, if you are present and she is safe, redirect the conversation or gently disengage the visit with something like " love you, Mom, see you soon" and leave. If your mother is cognitively appropriate as you say she has been assessed as so, she should begin to get the idea that negative behavior is not rewarded and positive behavior is. Have her assessed by geriatric specialist to confirm her mental state.
Do not let anyone, including staff, or your mother guilt trip you ...
Second “suggestion” - respectfully BUT FIRMLY indicate to people suggesting that you be more “supportive” that, while you are considering their input, you are simultaneously exploring medical intervention to help manage her anxiety AND YOURS. Also say you have been told (I’m TELLING YOU)- that adjustment to an AL setting sometimes can take months(!) and that you’d like to know what they think she needs in addition to your loving support.
Third “suggestion” - YES YES YES- get a recommendation FROM THE nursing director of the AL for a GERIATRIC PSYCHIATRIST, neurologist, or psychologist (one who can prescribe), and have a thorough work up done ASAP. it sounds as though previous attempts at medical intervention have been like trying to kill a flea with a bulldozer. Request that small doses of calming medications be TRIED for reasonable amounts of time before attempting to change her living situation again.
Fourth “suggestion” - distance yourself as much as you can from the “feeling” part of caring for your mother and instead become her “project manager”. My own mother, whom I ultimately learned to truly cherish and love dearly, was a hopeless agoraphobic who often baled on her responsibilities toward me, and gave my care to her 4 sisters. I was raised with the belief that her problem was my fault, caused by my honestly horrifying entry into the world.
I learned in my thirties that she was actually better off when she had to cope with my marriage and growing family as part of her landscape, and we formed a team that endure comfortably to her death at 95, in a wonderful residential setting that she loved,
You are worth the trouble, and you can do this. Cultivate a CANVAS HIDE, practice emotional separation, and soldier on.
I'm now sharing that my own late mother suffered bipolar with her out -bursted anger all her life, and I would not take any fuss-budgeting from her when things did not go her way. Back in 1946 to 56, she was responsible for her marital breakup and forcing six of us kids splitting up into foster care because no other family was available, and we all had our own behavioral problems from neglect. Even today, I still suffer dysfunctional family dynamics from their lack of or no communication at all, even after her death at age 95, eight years ago. My father, who had been too close to his late mother with his own trauma, let alone spend quality time with us then small kids and babies, died at age 91 in April 2014, 7 months before my mother passed.
Do what you have to do to take care of yourself. As long as your mom has care and is safe, YOU first. If you can't take care of you, you will be nothing for her or anyone else. Walking around the shell of a person you used to be, will benefit no one. Remember this: Your mom is in the latter years or possibly months of her life. You still have years left and a future ahead of you. Don't forego your life and mental health so that she is comfortable. It sounds like she won't be no matter what. It may seem selfish, but your own health will suffer if you do not stop, rest and breathe, do nice things for yourself and schedule her on your calendar around your life; not vice versa. We will survive this but we have to take charge to ensure a good and healthy mental and physical state for ourselves. Good luck!!