I'm not sure how much longer I can persevere...new to boards and need help!
Thank you for listening, I'll try to abbreviate this:
- I am the caregiver for my mother, I'm 60 - she is 86. Father died 10 years ago.
- We moved to the south last April from the northeast, I am her only child, a female, divorced, no children. We live in absolute paradise - sunshine, nice house (not fancy or new, but solid), beach five minutes away, but it's never enough.
- She refuses to see a doctor, however, has agreed in the past (but won't anymore) to visit with a doctor on Doctor on Demand - she says the doctors here in our state aren't "like they are at home" (in other words, good enough - but she had a very poor doc up north that had two lawsuits against him).
- Doc on Demand - lovely woman, gave her low-dose Zoloft for depression and an anxiety pill (not sure of the name, but stated it was very safe). We went over her meds several times with her while online. I wrote down the exact words the doc stated, and we showed mom what I wrote. I have a Ph.D and the doc told her to listen to me because I would never try to mess her up with her meds. Day later - I "messed up what the doctor said, and what I wrote was incorrect." Because of that, she refuses to take the anxiety pill.
- Mom will take her BP pill, low-dose aspirin and vitamins, but after starting the Zoloft, stopped suddenly (big no-no), and now wants to start them again because she says they're for anxiety. Tried to tell her again tonight the difference between the two, had both pill bottles thrown at me, was called a know it all, and told to get out. The anxiety pill is low dose, and supposedly will help her sleep - which is also non-existent - she walks the halls all night, yells for me to turn on the AC or heat at 2, 3, 4 in the morning. I'm exhausted. When I tell her I want to take a nap on a Sunday afternoon, I'm berated, and told "great, I have to stay at home while you decide to sleep."
- Her short term memory is almost non-existent...I have to take her through multiple steps to get her to remember where we ate the night before, what someone said, where she shopped, etc. She gets very very angry when she can't remember, and screams at me that I'm either wrong, lying, or a know it all. She has also begun screaming at me in front of crowds - restaurants, shops - and tells me with an evil smile to keep it up, and she'll just scream at me louder to embarrass me.
- She is convinced that our neighbors are evil, and claims the neighbor across the street hates her because they told her their political party did not align with hers and they didn't want to socialize with her. I was there when the conversation occurred - never any mention about politics - they caught us on the third day of our move when mom was having a hissy fit sitting in the car (she never talked to them - it was me). While we certainly do have some strange neighbors, Mom is convinced that the only place where everyone is good is back in the north (which she wanted to leave as much as me).
- I wait on her hand and foot even though she's very able - walks (with a lot of pain, but won't go see about it), can cook but doesn't know how to turn on our stove (never learned in this new house, refuses to do so). If she's hungry, it's my fault because I starved her all day. We go out to eat every night of the week, and then I have to take her on a long ride after. I would give anything to sit in my office recliner and rest.
- She found out last week that her brother in law has been dead since early November, and now wants to call his only daughter and confront her about "not telling her." (She didn't talk to her sister, his wife, for 10 years until the last year of her life when her sister had cancer and they reconciled.) The sole surviving relative in the northeast is a cousin, but she refuses to speak to her anymore because the cousin has never initiated a call to my mom. She tells me that she should go back north to see all the smiling faces, but then breaks down crying when she realizes that everyone she knew is dead.
- She's Italian, apologies to fellow Italians out there, but she gets very mean, very fast, has always swayed between telling me that I'm the worst person in the world yet tells everyone she meets that she has the smartest daughter in the world because I have a Ph.D. If I have a glass of wine at night, I'm an alcoholic like her father. If I have two glasses, I don't get spoken to the rest of the night. We have lived here since April 24th, I have been out three times by myself.
- She needs to see a dentist asap due to her dentures. She has very good dental insurance. When I ask her if she would like to make an appointment she screams and berates me, and tells me she'll do it when she chooses to do so (which will be never, but she'll kvetch about her teeth).
- She makes herself so upset that she vomits - she did that tonight. She also refused to take most of her pills tonight because she claims she took them this morning (she didn't), and that when she dies it will be on my hands.
- She makes me handle her checkbook - every day I show her the balance, and details. Her checking account remains within a couple of thousand of where she asked it to be, her savings account has never been touched, and she has a retirement account with our broker from which they forward funds every month. Even showing her the live balance online - she doesn't believe, and just knows I've made a mistake with her money. It took me six days to unravel her bank account last spring before we moved - double postings, missing deposits, etc. She cannot handle her account, and cries because she cannot. I do not need her money - I have two retirement accounts that I will tap at 65, and plan to take social security (if it's still available) at that time.
- Every. Single. Day I have to hear that she is dying, that I don't care, and all she wants to do is go be with my dad.
- Yes, she's been this way to me all my life. I've been the super over achiever constantly trying to garner enough accolades in life to make her proud of me, I have the Ph.D., I'm a published author, I've worked in positions that afforded her the opportunity to meet pro sports players, celebrities, and top politicians, I've won awards that I never knew I had been nominated for, but none of it matters, and I've realized that will never happen. Brags to everyone else, but pushes me away. My father was the loving parent, which I'm reminded that I don't have him to run to anymore.
- New Year's Eve was the anniversary of my dad's death - she's been allowed to cry all month, I cried briefly the other day when something reminded me of him, and she told me to stop.
- My nerves are shot...I've made a tee time for tomorrow to golf, but she wants to come along and ride along with me. When I'm on the phone in my office for business, she comes in and sits and listens in. Don't ask me to tell her I deserve privacy...it's her house, she bought it, and if I don't like it I can get out. In all honesty, with the real estate market in our area (seller's market - including rentals), I cannot afford to get out at present. The only thing I have faced her down on is her threat to move back to the northeast - I've begun to tell her to go ahead, and that I'm not coming with her. I walk on egg shells every minute of every day. I can't call friends from back home because she sits in on the conversation - even when I have my ear pods on, then demands to know what they said. If you don't tell her, there's hell to pay. I do have a POA - just signed last spring - it is all encompassing.
Comments
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Wow. That is a lot to take in.
Have you thought about what YOU want to do? It sounds like you are not going to please your mother, no matter what you do. While it is admirable that you are there to help her, you also have to maintain your own sanity.
Can you talk to her doctor about ways to get her to take the meds she needs?
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She really doesn't have a doctor - she used Doctor on Demand, and ran hot and cold about her. She keeps looking at the ads in local papers and on our church program to find someone who "looks nice." Other than that, it's as far as I can take it with her. I may be 60, but to her, I'm 6 and I don't know what I'm talking about.0
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jordansfca wrote:
Can you talk to her doctor about ways to get her to take the meds she needs?
She really doesn't have a doctor - she used Doctor on Demand, and ran hot and cold about her. She keeps looking at ads in local papers an in our church paper to find someone who "looks nice." Other than that, my hands are tied. I may be 60, but to her I'm 6, and I don't know what I'm talking about.
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You are definitely in a tough situation.
It does sound like you are waiting for her to make decisions she can’t or won’t make.
Perhaps you can talk to the doctor she did see via video and ask what your options are and/or what she suggests.
Good luck to you.
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I’m sure that felt really good to get off your chest, and I’m sure you left a ton out. Welcome to this support group, first of all, and know that you are not alone in many of the situations you are dealing with!!!
My mom has also begged not to go to a facility but she is also unhappy living with me. I can’t even think without her interrupting my thoughts unless I’m in the bathroom (sometimes not even then) or if I stay up after she goes to bed. I am also on edge, due to the constant caregiving,explaining,pretending,deflecting and so on. I have finally gotten to the point where I am going to have mom go to a memory care facility. I’m afraid she will hate it and me but I have to save myself and you need to save yourself as well.
Have you tried hiring a companion to come in for a few hours a day, a few days a week? That might give you some relief although your mom most likely will not be happy about it. We do that and even if we have nothing to do or nowhere to go, it’s better than staying home. My mom gets irritated about it and makes snide comments about us hiring a baby sitter for her, but I just ignore it because I know that I deserve a break. How about day programs? Also, I would seriously consider respite care at a facility. You could try 2 months and maybe she will end up liking it enough (or you will) and she can stay there. The socialization might help her not be so dependent on you, and help you to get a much needed break.
My mom was paranoid about her finances as well. I have decided after seeing how stressed she was to keep all bills and finances away from her. Once in awhile she asks and I just reassure her she has plenty of money and all of her bills are paid. Thankfully she doesn’t ask to see. Maybe you could try to stop showing your mom her balance and talking about finances and she will forget about it. As far as her meds, we lock up mom’s meds and have them in a marked daily dispenser. That helps when she claims she already took her meds, I can show her the date and show her the pills still in the section for that day, this usually works, if not her Dr says its not a big deal if she misses a day.
Please continue to post, it really does help!
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It sounds like your mother is proud of you but withholds love to control you. I'm sorry. It shouldn't be this way.
I don't think I could live the way you do. I would get out if it meant living in a trailer in the hills.
A psychologist helped me. I don't know if you need one to tell you what you already know (you are miserable, self-mutilating, and in a rut) but it couldn't hurt. Somehow, you need to find the will to save yourself.
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I am in a similar situation, all I can say is. Placement is rough I am currently in the middle of placing my own mother or trying. My mom has a bevy of issues beyond the dementia that make it hard to find placement.
One thing I can say is the guilt ad helplessness are normal at the core you probably want to do what do what maximums her general good across the board. Unfortunately, that is difficult and people will tell you to not feel guilty about the situation, it is often easier said then done for some people.In truth I have learned you have to accept the fact that for you to live happily she may have to suffer. This is something I have recently come to terms with and have accepted, and in truth I think just have to dig deep inside yourself and ask yourself what do you value most and take the action that takes you to that goal. Since you have to live with the choice for the rest of your life, just make sure it is one at the very least make sure it is one you can live with.All the best from one struggling to another.0 -
It seems as though several of you are in very difficult situations. I'm so glad the message boards for you to use as either a resource or a safe place to vent.
Always remember the helpline is available 24/7. The number 800-272-3900 and ask to speak with a care consultant.
eagle
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Welcome prpro. That is indeed a lot of information to sort through. Do you have a handle on your mother’s stage of dementia, even without a formal diagnosis? Look up tam Cummings stages of dementia and it may help you. Also, do you have her power of attorney? That is going to make a difference about what you can do. If you don’t already have it, you may need to consult an elder law attorney.0
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Wow! I feel terrible for you! Have you done much research on dementia? There are several different types, that's why a proper diagnosis is so important. Please start reading as much as possible about dementia behavior. It will help you keep your sanity. Your mom sounds like she has always been a difficult person, I am sorry. I'm a glad you found this0
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Prpro: you mention a lot of attributes but no mention of a dx of dementia. There are many long-term issues. You are CO-DEPENDENT. See a counselor/therapist about this. Read about "adult children of alcoholics". This also refers to other types of bad parenting. There was a book written several years ago. In the meantime, speak with the Care Consultant at the Helpline as a start.
You need to build your confidence up. You do not have to accept this life. You can learn to stand up for yourself and have a better life.
Stop talking to your mom about money and her pills. You have to learn a new way of communicating. Read a lot of threads and read the online reading material. You can do it! Keep posting.
Iris L.
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I am new to this. I live out of state, all my brothers live close to my mother's house. My brothers want me to leave my family and move back home to take of her. Which means leaving my husband and job. If I move back, I will not have a job which I financially need. Any help or advice will be appreciated.0
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Tell them to stick it. What they are asking is ridiculous. Why you, because you are a woman? Time for them to man up.
BTW: You can start your own thread by clicking on the "new topic" button and will get more responses.
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Queenbea - you will get a better response if you start your own thread0
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prpro,
It surely sounds like your mom has dementia, but you don't say that she's been diagnosed. You have tunnel vision about your options, which isn't unusual. Caregiving is hard. First, call your friends. Touch base. Get it off your chest.If you've been on the forum you will have seen this: http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdfhttps://tamcummings.com/stages-of-dementia/
Her ability to use reasoning, judgement, and logic, to have initiative, empathy and insight, are diminished. You will not be able to reason with her, though it seems like you can because she can still have a conversation with you. The easiest thing to do is to go along to get along, no matter how far out in left field she sounds. She tries to cobble together whatever memories she can still access to come up with a story that works for what she sees at the time. Though she complains of nothing to do, her ability and even her desire to do lots of activities is reduced. Likely she is able to handle just a very few sequential steps in a familiar task at this point.
Without a working short tem memory it's going to take a lot of repetition and routine for your home to seem familiar. That's why she's stuck to you like glue--you're the most familiar thing in her day. Her lack of short term memory is why she can't figure out how to use the new stove, and why she can't recall her meds, or if she's eaten. She's way past the point of making dentist or doctor's appointments--like the bills, this needs to become something you do. Pick one, don't discuss it, & when you go tell her that she made the appointment & she has to have her yearly wellness check up or medicare will cut her payments. (And you can tell her that each time, because she won't remember the prior visits.) Make sure the doctor knows ahead of time why you're bringing her in. A version of what you've shared here in a note slipped to the staff at check-in would do well. If you can take her to a geriatrician right off the bat that would be best.
Don't be immobilized by a promise you made to someone who thought they'd be living an independent old age, free of a disease requiring 24/7 care and oversight. Finding a place for your mother does not mean that she's going to be institutionalized. Start looking around at what's nearby. Read the forums for what to look for in a dementia focused AL or MC facility. Consider if a group home might be a good fit. Most of all, get her to a doctor, if you haven't already, to get a diagnosis and have any other causes ruled out. Good luck.
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prpro
I am sorry that you are so burdened while trying to help your mother. If its dementia or another similar diagnosis - all the reasoning and logic responses will not work. I learned that the hard way with my parents.
Is there a day program that your mom could go to? My mom went to one, 5 days a week. She ended up loving it. We started slow. She was able to have her hair done, go on field trips, etc. Even when she needed a w/c and oxygen it added to her quality of life and gave me a rest.
Also had to grind pills and meds and put them in different capsules to disguise medications. This was only for a short time. But I do think, like others, you need a geriatric specialist for your mom. Not sure you will be able to pull that off now, but keep that as a goal. They know how to approach meds and behaviors.
I wish you a better year moving forward. But sounds like your situation must change for the better and soon.
Karen
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So sorry for you. I feel much like you do much of the time. My husband was diagnosed a couple of years ago, and although friends are sympathetic, and offer to help, we bear the brunt of it. I cycle through periods of anger, guilt, sadness, grief, and feel exhausted most of the time. I am a retired RN, but never intended to have to be a nurse forever. I’m just now feeling the need to find support for me. I actually found a great support group before Covid, but that ruined everything. Yeah, like we don’t have enough challenges. I have no solutions for you but I do know what you are going through and my heart just aches for you. Hopefully we can both find some solace from this community. As I’ve just discovered this today, I can’t help you but so hope we can find the help we so desperately need.0
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Prpro I hear the deep, life-long pain, of hungering for your mother’s love. I hear the rejection and criticism you receive daily. You have recorded beautifully the multitude of attempts to please your mom, to no avail. Your desire to be a good daughter is clear. Your pain is even clearer.
I joined a local support group for dementia caregivers. It has helped me so much. I was devastated when my Dad (94 in B&C) yelled at me, accused me of controlling his life when I arrived to escort him to the doctor visit. We, too, ended up having a telehealth visit. Dad talked with the doctor by phone, sounding very articulate. And then the doctor called my cell, we talked while I sat in my car. The doctor stated “I find it can be quite effective to triangulate in cases like this”. Dad refused the flu shot, and the Covid booster. And the Dr. said OK. It took me a week to get over the emotional attack from him, the barrage of unkind words.
So I learned to protect my heart. I refused to answer my phone. I let it go to voice mail. (I realize you, prpro can’t do this). When I replayed the message, at the first accusatory word, I deleted the message. The point is, He can vent. I DON’T need to hear it. Gradually, I could revisit him. I learned to say, “please don’t be mean, I am trying to help you do …”.
I DON’T ARGUE, I DON’T REASON. this causes conflict. So now I say ”that’s interesting” and change the topic. Like another person on this thread, I learned to tell him all the bills are paid, everything is safe. Reassurance.
I am new to this communication group. And I realize how much my local dementia support group has helped me cope and learn new techniques. Does your mom have dementia? Or is she just a mean, controlling person. You mention life long issues. Teepa Snow online videos are very good for educating yourself about dementia and HOW to interact.
When I declined to take my Dad in my SUV, once the wheelchair bus transport was set up, he said “I knew you’d never let me in your Tahoe again, and I gave you that vehicle”. Now he has accepted the w/c bus. But the words can hurt.
I have realized in the past 2 weeks, it is my pride, that keeps me thinking I can fix this situation, or fix my Dad. His brain is dying. I can not change that. AND I am NOT responsible for consequences of his decisions for the past 20 yrs since Mom died. He, too, refused to go to the local doctor. “He doesn’t like me”. Looking back I realize he was fearful of lots of things and getting confused and overwhelmed. But NEVER open to input. My hands were tied. If I tried to suggest adaptive equipment (I’m a Physical Therapist) he would get mad. He called me such bad names, after I left the room, that my husband who was present, still won’t tell me.
This is a tough road ahead of us all. But we can grow as human beings, as we continue to learn new ways of healthy coping, and SELF CARE.
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Welcome to the Board!
As an only child with doctoral degree...I can relate. Getting older with ALZ/dementia is not something a higher level of education addresses unless your degree in specific in areas like (social work, psychology, neurologists, geriatrics...).
Getting her diagnosed is essential for her health/treatment (she may have other underlining health issues).
I didn't see where you said you have POA (including finance), Health Care Proxy...it is highly recommended that you acquire these things as soon as possible, if not already completed. These things help with subsequent stages/steps that are likely to occur.
Hardest thing for me is learning how to communicate to effect change. Keeping mom in the loop, running things pass her, asking her questions...adds more stress by delays and putting things off. Cognitive decline/impairment at any level reduces and at some point eliminates the ability for logic (mind can't connect the dots or think through a situation). I believe there is a level of fluid awareness of this decline so the mind compensates with behavioral responses anger, control tactics, fabrication, etc. I also believe that dementia alters the structure and functions of the brain to the point that if someone is arguing a moot point or arguing out of context...you have to change your communication style or not communicate certain things (that's where POA...comes in). *It is a waste of time/energy to argue with someone who does not have the capacity to understand, even if they say that they do. You will know her level of mental capacity based upon what she says and does.*
Research doctors in the area (e.g. insurance provider, elder services, ALZ helpline...). She can accompany you to your appointment (general checkup). Make the appointment, bring her with you, then go out to lunch/dinner/shopping. Tell her you're going out to eat/shopping after your appointment, she must come to make it easier (you won't have to go back home and pick up her, can't wait in the car too hot or too cold...). Your doctor may be able to refer to a doctor for her or may be able to see/treat her. You go first!
There are many groups/agencies that can help you with communication, planning, finding a doctor, and support. I start my searches nationally, regionally, and locally.
AARP,
Alz Association/Helpline (800-272-3900),
State Elder Services/Council on Aging,
National Council on Aging (NCOA), and
Trualta.com
I hope this helps.
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https://www.youtube.com/watch?v=Cetf0Q566Hc
https://www.youtube.com/watch?v=6cZTgG6kDjs
Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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