My parents are in their late 80s and living independently, with my help. I am retired and able to help. Just in the last couple of months, mom is changing. She is very forgetful, moody and explosive. She will tell the same story three times in an hour. She gets very angry and blows up. This is not like her. She is quite depressed and finally talked to her doctor about it. She went on Zoloft about a month ago but now she is getting panic attacks. She has the right to be depressed. Dad has a number of medical issues and needs around-the-clock care. He is in Hospice so they have some help but she won't take much help from me. I come in every day and help as much as I can but she won't let me do too much. I do all the driving, most cooking, shopping, driving making appointments etc. But mom is a perfectionist and feels so much pressure to take care of everything. She has spoiled dad his whole life so he asks for so much, in addition to what he needs. And what he needs is a lot. He falls and can't walk around, so we wait on him hand a foot. His vision is bad too and is always dropping food and spilling drinks. Plus, he is a very selfish pain in the ass. Everything has to be about him. We are all frustrated with him. I have a brother but he doesn't do much.
This sudden decline is alarming. Mom has always taken care of everything with them. The finances, managing the home, taxes, etc. My husband I can take this over but it is the last thing she wants. We need to do this before she completely loses it. I am not sure what to do for her medically. Where do I start? She is so touchy about this issue. I fear even bringing it up. She will be devastated. She and I have always been so close and I fear she will feel betrayed.
Thanks for letting me get this off my chest.
Bless your mother. And you. No wonder she's depressed. From what I am reading, your mother has "caregiver syndrome". She has been - voluntarily - keeping the burden of caring for your demanding dad squarely on her own shoulders.
Yes, she may be a perfectionist, but she's most likely also trying to keep you from having to be burdened.
And now all of the exhaustion, guilt, depression, shock, the switch from wife to nurse, dealing with a demanding care recipient has taken its toll.
My heart goes out to her. (I'm 64, caring for a demanding mother (96) and sometimes I think I'm not going to make it to the end.)
There is a reason that 70% of all caregivers over the age of 70 die first, and it sounds like a crisis is brewing right now. You can head it off at the pass (hopefully) or you can wait until it happens and then step in. I'd try to head it off at the pass.
My input may seem somewhat simplistic, but you've got to start somewhere. If it were me, I would sit down with her and gently tell her that she is suffering from caregiving. I would forget trying to get her to go to the doctor for a diagnosis and would concentrate on getting her some help with your dad.
Maybe if y'all can find a sitter to stay with your dad a few hours a day, you and your mother can go have lunch and enjoy each other's company. And who cares if he doesn't like it. In my world, the care recipient doesn't get to call the shots.
I know you fear bringing it up. This is hard to do.
Question: Is your dad ready / in need of being placed in Assisted Living?
While this is easy to say and not so easy to do, I would encourage you to learn to not be 'reactive' to what your mother says to you. When you feel you are about to be triggered (or start as it is automatic responsive behavior), tell yourself: I am going to stay centered, calm, and just listen - with and through compassion.
As you need to leave for a moment and breathe.
With that said, changes need to happen and this will not be pleasant for her.
She will feel - perhaps - outraged, angry, fearful (loss of independence and the 'way things have been for decades' that she doesn't want to change). She will want to hang on to the last inch or last second of (her perceived) independence, hope, behavior. She is losing who she is / has been and this isn't easy for any of us. It is more difficult for a person who is accustom to being independent and 'taking charge' / being responsible for everything (or her husband, at least).
You need / must have legal authority to do what you need to do - if not now, soon enough (i.e., POA, soc security payee rep, whatever else). Call an attorney that specializes in elder trust / care matters. If there is property involved, you need to ensure that you / a family member can handle things legally - as necessary.
Expect her to be angry. As you need to, leave the room for from 2 minutes to 2 hours to 2 days. This is a sensitive, delicate situation that needs to be addressed and it won't be easy going.
* If your mom isn't diagnosed with dementia or even if the MD doesn't use that word (often they do not), they can write up something that says your mother is unable to manage her estate / finances as needed 'at this time.'
Start here ... #1
Get her into the MD office telling her its for another reason, i.e., annual xxx.
Needed MD assessment / appt for DMV (is she still driving).
Covid testing ? Flu shot? Whatever it is. You need to have something in writing from MD to have any control over her legal affairs (and healthcare, etc).
Start here #2
Perhaps role play with a spouse / friend ... have the person act / respond as your mom might so you can practice your responses.
REFLECTIVE LISTENING_______________
* Always always reflect back to her what you hear her say, i.e., I know you want to continue to help dad with xxx ... I understand that you feel xxx (whatever she says). And then stop.
- You do not want to say "but ... you need" ... "but you can't xxx".
- This sets up an argument where she will want to defend herself.
- Empathize with her. Try too: As it might work ... when she does something that isn't right or misses paying a bill or something, ask her:
"When you plan to xxx and you do xxx instead or you forget to do xxx, how do you want to handle it?
While you don't want to corner her, you want to :
1) help her become aware of what she cannot do any longer (without consequences - financial - health care / injury) and
2) give her the independence to consider what SHE wants to do 'now.' (Even if things do not work out that way)
This strategy may or may not work, esp if she continues to say "I can do ..." or is in denial.
You do what you can in the moment.
Then another time, you try again.
Always remember. You are doing what is in their / your mom's best interests, even if she isn't able to understand or accept it.
In the event she will not 'give a little' or do what is necessary, the bottom line is that she will do what she wants and the chips fall where they may. If she refuses help (i.e., finances), limit or not allow her to use credit cards.
You do what you need to do (for her).
Sometimes you need to be sneaky to be supportive.
Ultimately, if she handles everything and won't let you, then it is up to her.
Then, you let go.
Take care of you.
Gena.
In addition to everything in the posts below, encourage your mother to write everything down no matter how minor, for both your Dad and her. At minimum, at least for your Dad.
Your Mom is under a lot of stress with your Dad's health. Yes, she might be forgetful, however, with all the stress from what is happening with your Dad, it is worse.
Encourage her to write everything down, passwords, names of medications, each time she went to the bank, every doctor's visit, etc. Basically do a daily dairy of everything. Keep that book handy because if she cannot understand what is being said, then she can have the person who is telling her what is going down, to write it down in the book and she can review it later and refer back to it.
Because she is a perfectionist, she then can then go back in time, and review what she wrote and what happened, and therefore be "correct and accurate" when she talks to someone.
If she wants to share it with you, great, but do NOT make judgements or ask questions or offer help unless it is life threatening. Also, make sure you ASK her permission from her if it is okay to make a suggestion or take action or.... She HAS to be in control. It is the lack of control that is causing the confusion and the blowups and an even greater loss of memory. There is a lot in her life that she can't control, so allow her to control what she little she can control by giving her helpers.
Help her gain back that control and she will welcome your assistance. Help her to use the book so that both you and she can remember all that is going on. Just doing a daily diary will help.
Maybe she will let you write in that book too....about what is going on with your Dad. As for you, I'd write in a different book all you are doing and observing about your Mom. It will come in handy for you too. Writing in a journal is a form of stress relief....
P.S. Make sure she is not in physical pain. If so, get her help to take care of the pain.
Work with an Elder Law Attorney to acquire a conservatorship to ensure their well being. You cannot make them happy, but you can make them safe. Perhaps they can be placed together in the same facility, even if not in the same apartment.
Don't let your mom's fear stop you from getting her help. She will not get better by ignoring her symptoms. Things will get worse. Sometimes you have to do things that are uncomfortable. Remember you are trying to help them.
So get her an appointment with her doctor and a referral to a neurologist. Do not wait. We tried everything and my mom got worse. They were in a dangerous situation. It ended with them both in a nursing home. Are they happy, well, my mom isn't but they are finally safe. If my mom had been diagnosed sooner, I think she might have been able to stay in her home longer but they would only do what they wanted to do. They would not accept help into their home easily and as my mom fell further into dementia, my dad refused to accept it. They supported each others denial of facts and they ended up exactly where they did not want to be.
Was it hard, yes it was. Is it still hard, yes it is. Do I regret things, yes I do. Can I change things now, no I cannot. I can love them and try my best to make sure they have whatever they need or want. Can I take them into my home and care for them? No, it is too late. Could they have chosen a different path? Yes, but they chose not to. Don't beat yourself up. You can offer them options. Find out what senior communities are near you and visit them. Try and make your parents realize that life is changing and they will have to change to. You cannot fix this. All you can do is help them see they have options and make clear that life as they know it has changed, forever. It is time to face the future and you will be there to help.
This is a great website. People care, I send you love and hope for a better future for your parents. I know it is hard but ignoring it just makes it worse, and it makes them less safe.
Sometimes you just have to step in and make decisions for them. Oftentimes, in the elderly they know something is wrong but they're not sure.
For example, when my mother started to walk behind a car backing out in the supermarket parking lot; I couldn't figure it out. Mother had hearing aids and cataract surgery. Looking back, it was the beginning of the "peripheral" vision going due to Lewy Body Dementia.
Either an emergency will happen usually at 2AM on a rainy morning or mother will be relieved when you gradually take over. My mother was a powerhouse--driving to Boston, on every Church committee, the "go-to" person if any of the other women had problems in the neighborhood. Mom was a listening ear!
Can you get dad an Up Walker Lite. Check out local day programs -- respite and bring on the troops--occupational therapy, physical therapy, speech therapy, home care.
The health insurance will cover durable medical equipment. I know you are just starting out but you will learn along the way. Sign up for the portal at the doctor's. Have everything delivered that you possibly can and try to store your energy for the important things.
Have the Church people come every Sunday and make friends with your parents' neighbors. Take it daily...
If you're retired, I'm going to assume that you aren't exactly a spring chicken.
I want you to look down the road a bit.
What is going to happen to this house of cards when you or your husband gets diagnosed with a serious illness?
If mom is experiencing a change of mental status, she needs to be seen by her doc, or at urgent care.
If she started a new med and developed panic attacks, the prescribing doc needs to know.
We have an expression here...she gets mad?
So what?
Sometimes being an adult includes angering your parent. You need to take action now.
"Mom, we're going to urgent care to get you checked out for a UTI. Get your purse". Start there and let us know the results. We care
This would give mom a break.
If she is resistant to the Respite stay maybe talk to the nurse about telling your mom that it is for "pain and symptom management" this is another reason that they would place a Hospice patient in an In Patient Unit.
I am sure the Nurse, CNA and Social Worker all see the stress that mom is under and they also might agree that this would help mom as well.
Despite the fact that some people think that aging in place can be successfully accomplished by everyone, it simply isn’t feasible in certain circumstances.
Have you been in touch with Council on Aging? You can schedule an assessment of your mother’s needs. Your father’s situation sounds especially difficult to deal with.
Look at all of the factors in this situation and see what resources are available for you to utilize. Don’t even attempt to continue to care for your parents on your own.
Look into facilities so you can go back into being their daughter. You’re not abandoning them. You are doing what is best for them. You will be a great advocate for your parents.
Their needs are going to increase and you will find yourself being overwhelmed if you don’t start planning for their future care.
I don’t feel like this is a ‘wait and see’ type of thing. It’s better to be prepared than to end up being caught off guard and not knowing where to turn.
The best thing would be for both to be in a care facility. Your worries about how mom will feel betrayed may be real but aren’t valid. It isn’t betrayal to make sure that your beloved parents have the professional care they need. Betrayal would be if you didn’t do what is best for them.
First off , they are not living “independently “. They are living at home but they are not independent . This is what all the elderly say when they have their kids doing a lot for them . You are helping to prop up a false independence .
I would tell Mom she needs to go to the primary care doctor to get checked for UTI. This could cause sudden change , decline or worsening in mood in the elderly. Hopefully the doctor will order some blood work too , to rule out other medical issues . Some of these issues can cause cognitive changes that mimic dementia .
Also do you have POA so you can take over the finances ? Take Mom to get that drawn up at the lawyer before she gets worse .
Many elderly refuse cognitive testing . Some people say to tell them it’s a Medicare check up and don’t tell them they are having cognitive testing or that they may have dementia . Many with dementia will deny it . It’s often better to not even tell them in your mother’s advanced age because not much can be done and to talk about it just upsets them . Usually an antidepressant which she already has and perhaps some med to relax her . You can always tell her it’s to help relax her so she can sleep better . Good luck , let us know how it is going . If you don’t think Mom and Dad are safe home alone you will want to hire help for when you aren’t there if you haven’t already done so . Use your parents money , not yours .