My grandmother was recently diagnosed with cancer. She is 80. I have hospice care experience and am her primary caregiver. I also have experience working with people with mental illness. However, I have never been primary caregiver for anyone.
The issues are several: she has hoarding behaviors and what is known as Diogenes syndrome. She also has histrionic personality disorder and covert narcissism.
I can manage the hoarding to some extent, but the personality disorders are much more difficult. The histrionics are such that when she cries or screams I honestly have no way of knowing if I’m going to find her on the floor bleeding out or if she dropped a piece of paper. That is literally not an exaggeration.
She stages falls, has very selective mobility issues (she can get in and out of her truck with no problem but can’t step up onto an inch high curb), she can stand up, get out of bed, etc. with no problems at home, but needs three people to help her out of a chair at the doctor’s office. She keeps me waiting for literally hours to go with her to run errands but can be at appts on time without issue.
All of that is to say this: right now things are taxing and annoying but manageable—I’ve set boundaries about the controlling time wasting, largely ignore the public theatrics, and wait for a follow up distress call (which never comes) before running every time she screams.
However, what am I to do when her illness progresses? At some point in the near future what was fantastical is going to be real. She is going to be in pain, she is going to have many of the issues she currently outright fakes or exaggerates. How is it best to care for her kindly? Should I simply start now acting as if all is real in anticipation of when it is? I don’t want to be so wrapped up in annoyance that I am ineffective caring for her. Is it best to simply set aside the boundary setting at this point?
I appreciate the help in advance.
Your grandmother is extremely fortunate to have a granddaughter like you looking out for her wellbeing.
I don’t have to point out to you that this situation has complicated your life.
Now that you have spent a great deal of time with your grandmother, you have discovered who she truly is. Use this assessment to find suitable care for her.
Honestly, I feel that your self awareness has placed you one step ahead of most people who come to this forum for help.
You have a strong sense of who you are and what you want out of life. Caregiving for your grandmother was only meant to be a slight detour along the way. Correct?
Personally, I think that you have invested enough time in this situation to know that you have gone as far as you should.
These situations have a way of snowballing.
You are already anticipating your grandmother’s demise and how difficult it will become for you to combine caring for her and getting your master’s degree.
You say that you know when to use your own oxygen mask. The time is now. Your education comes first.
Why not put an end to your hands on caregiving now and allow a staff at a facility handle her care?
Very often, people see quicker and more productive results by being an advocate for their family member rather than trying to go through everything on their own.
You will also eliminate your stress, so that you can fully focus on school.
Wishing you all the best. You deserve to live your best life. Your grandmother will be well cared for in a facility. You can visit her as often as you like.
Take care.
Here's the answer to your original question.
You should not be caring for her. Absolutely not. She needs to be in a care facility where professional staff will meet her care needs 24/7. Considering her age and the cancer diagnosis, I would not advise you to even try homecare with her. She needs to be in a care facility.
When people are like your grandmother, family should not do their caregiving. They respond better to staff providing for thier care needs. It's not even about boundary setting. Family should not be caring for family when the person needing to be cared for has the disorders and behaviors your grandmother has.
Please heed what I'm saying to you. I cannot emphasize enough that you SHOULD NOT be doing her caregiving. She needs to be placed in managed care now. A nursing home will provide for her medical and care needs. The staff will not play her games or cater to her hysterical nonsense, but she will get what she needs.
Does anyone have POA?
Did the doctor say what her life expectancy is and when you should expect her to be in pain, weak, needing physical care ?
Does grandma have any money or a house to sell ? If not perhaps a Medicaid application needs to begin .
Are you planning to be her 24/7 caregiver ? Which considering her behaviors , I would discourage any ONE person to be her 24/7 caregiver .
IMHO a plan needs to be in place for facility care when grandma is needing more help and/or can’t be alone .
IMO this is NOT for family to take on .
My mother was a narcissist , the doctor told me she had to be taken care of by NON family members due to the manipulative behaviors that she would pull on family members .
Good Luck .
From my experience, the only way to survive a narcissist and save your sanity is to run as far away as you can from this type of behavior. I am assuming you have POA for your grandmother, and my advice to you is to put your grandmother in a nursing home and you can then visit her as often as you like.
But regardless - because you are dealing with an elder - people are more apt to thread carefully and question others and their dealings with them - and frequently - even when they KNOW that the elder may have dementia or cognitive decline - still put up a protective barrier around them and lean into believing their lies.
You combine the fully formed lies of a narcissist and the cognitive decline of an elderly person with dementia and that is a very bad combination.
As a caregiver you have to protect yourself. Because the lies can come back to bite you in the rear end.
Can you let us know how old you are?
Are others involved in your grandmother's care? A husband, son, daughter (your parents?)
You say that you have Hospise experience.
Is your grandmother's cancer metastatic and is she stage IV? Is she undergoing treatment, and if so, what kind? Certain treatments can be very debilitating.
Have you moved in with grandmother permanently at this point?
More information may help us as you now and as you go along with this mission to provide care.
I will caution you in the beginning that it is important that you let your grandmother know that you will help her so long as you feel able and qualified to do so, but that you will move on with your own life when you feel she needs more care, and will require her to seek placement so she can receive care.
It is not necessarily a death sentence to get cancer at 80. Just got my second diagnosis with it myself some time ago, and am up, about, active and doing very well without help at this point. My point being you cannot know that your grandmother will not live another decade and one half, and I can only guess you would like to get on with your own life, education/work, apartment, friends and family.
There's a lot to consider here. Especially dealing with someone who has a complicated diagnosis of mental disorders.
What sort of quality mental health care is grandmother receiving at this point? It will be important that you attend some sessions of therapy to get clear with such a person mediating exactly how to keep boundaries in effect.
I honestly cannot imagine this being easy or going well, so I do hope you recognize that this may work, but that it also may NOT work, and there needs to be a good plan B in place.
You mentioned your grandmother has no other family. I am assuming she has become estranged from family members due to her behavior, or there have been tragic circumstances in your family that resulted in all of this falling on you, or a combo of both.
So often on this forum we see a kind, conscientious adult child or grandchild doing everything they can and more for someone who seems completely undeserving of their efforts, and will never appreciate them. Sadly, they will never be able to give the adult child or grandchild the love and acceptance they SHOULD HAVE given them.
Do what you want to do for this woman but don’t martyr yourself, I guess is what I’m saying.
Interestingly, my site says that this comment has had 5 likes since being posted 5 hours ago, and I can’t find any reference to them.
I took the role on myself because I thought given my skills and experience I would be able to deal with her. I moved in with her a couple months ago after she had a heart attack. I was living on the East Coast, had just divorced, and was in a place in my life where I could do what I did.
There is no other family so she will have to go to a facility if I cannot continue care.
I am not a person who will go to insane self-sacrifice. I am a giving, loving, kind person who has spent her life working social service. I say all that to say this: I am completely comfortable with who I am and my concern for others. I am also a firm believer in putting the air mask over my own face when it falls in the plane.
She is receiving zero mental health services because like most people with NPD she doesn’t feel there is anything wrong with her.
She does have resources for care. I do not, at present have POA, however, her providers are working with us on that. We’re trying to give her a minute to process and decide on treatment before really hammering things, but I do have to say, things are much worse than I imagined before arrival.
As a covert narcissist she is far better concealing her issues than most. I had not taken that into account before coming out here. She had seemed so kind and vulnerable and appreciative of my help with the heart issue that I totally lost sight of the fact her behavior was manipulation to get me precisely where I am. And she’s gone from a little crazy to actually mean just two months.
I am meant to start grad school in the fall. I am trying to decide if I should see her through, do as much course work online as possible or if this whole idea is just untenable.
I do appreciate all your comments and support so much. Despite my comfort level with my basic human decency, I will say upfront that this is actually disturbing me—I mean the idea of walking away.
I’m wondering if there’s maybe a middle path of some sort. Maybe staying in town but moving out or getting in home care or something.
I believe you may have found an answer for yourself already:
"I’m wondering if there’s maybe a middle path of some sort".
Not the 24/7 help that becomes the whipping post. (Because your Grandmother is angry about her circumstances & you are the person on the spot it gets directed at).
Not tuned out with a 'not my problem attitude'.
A middle path.
It's called Advocacy.
You can be a safe distance, in your own space & still visit.
You can be a go-between between your Grandmother (if she allows it) & her Care Team (eg visiting CNAs, Nurses). You know her well. Know how she thinks. Almost a 'translator' role. In mental health I've read it called 'supported decision making'.
Of course it is possible your Grandmother will refuse the idea of home care services. (My LO sure did). There are many tricks to get this started if you want to head for that direction.
Take the time you need to think.