What should I do if my mom wants me to quit my job to take care of her?
I posted this in another thread and members there kindly suggested that I start a thread... Thank you to those members! I appreciate your recommendations... so here goes... I'm not sure if this is the right place for this conversation but I need to vent and perhaps solicit some suggestions for my mother - 87 years old and she's very angry and frustrated with me that I don't quit my job of 37 years - which I dearly love - and need for my own sanity (financially and otherwise). I've tried many times to hire caregivers for her and she fires them or refuses to allow them to come into her apartment (she refused to stay in Assisted Living facility - so we gave in and moved her into her own small apartment with the condition that she would get 'home help' when the time came). The time has come and gone...helpers are 1)Lucky to get in at all 2)Get fired soon thereafter. Yesterday was the last straw; I took her to the grocery store - before she could even get out of the car she wanted to tell me that she'd been thinking the night before and had come up with a solution - she'd figured something out - the something she'd figured out was that the new caregiver, T. who my husband had met exactly one time - and passed her info on to me (she works for a local elder care organization and was looking for new clients - yeah!) was and I quote 'having the hots for my husband!) She's always suspicious and says that this one 'has eyes for me' or that one is asking questions about me or my husband, etc. etc. That there is always a 'sexual' intent to sneak around and have a relationship (nothing could be further from the truth as my husband and I have a very happy/solid marriage, besides we're 71 and 64 years old - so shopping around for a 'good time' are just not on our agendas!!) It is a ridiculous conversation to have and I refused to engage in that discussion with her. She accused me of 'not wanting to hear the truth'!! Really? Well, I got her into the store and I stopped in next door for an appointment that lasted only 1/2 hour - back to the grocery store I found her and she exclaimed that's she'd barely gotten started - I said I've really got to be getting back to work - I thought she was picking up only a few things - well obviously a misunderstanding here as she'd come to buy up lots of stuff to 'stock up' - however the caregiver was supposed to come over and clean out the (stuffed, filthy refrigerator) and packed freezer - and she's buying pork roasts, sausages, 5 quarts of creamer, milk, etc. I asked her to wait until after caregiver gets the fridge cleaned out - that was the second time on this trip that she started yelling at me - making snide remarks about 'why don't you just do what I'm asking you to do for me!!!'. Refused to let me help her to the car; refused to let me help her put her credit card in the machine at the check-out. Made a real scene. I finally got the car loaded in the pouring rain (at her insistence that we not wait any longer for the rain to pass - since I'd rushed her to wrap up the shopping - because I had to get back to work). It was a lunchtime mid-day outing - but she forgets that only the day before I'd taken 4 hours off work to help her order some flooring/window treatments for her apartment - two days in a row of being unavailable at work is pushing it. My boss is very understanding, but will only tolerate so much of my absence. At any rate she was so angry on the way home (10 minutes) she spewed so much hatred at me - incredible, disappointing and saddening. She brought up everything she could think of in those ten minutes to tell me how awful I was, how I should get in to see a psychiatrist because I must have schizophrenia (my sister does) and other insults hurled at me until she was out of the car and headed back inside her apartment...basically told me not to come back and she'd never go shopping with me again...ugh...she fired the caregiver who was scheduled to come in today to clean out the fridge; called and cancelled all the improvements we'd ordered. I have no idea what to do about her now. She lives 3 miles away....I have a full time job, a home, pets, husband, etc to take care of, so life goes on - but not sure what to do about her and her anger issues... I think her mental state is declining and I've called her doctor and left messages but he will never call me back. Instead he asks her about me - and then she tells me ' I think my doctor is 'sweet on you'. He's never met me! I'm at a total loss today as to what to do, if anything. I'm burned out and exhausted after the last two days of dealing with mom...I guess I'll go bury myself in work, etc and wait to see what her next move will be - maybe she'll get someone to come in and help her. I could have someone contact her (from local caregiver organizations, but I'm completely out of ideas)...
And, no she does not have 5K a month for any kind of living situation. She has around 2K and that's it. Unfortunately, too much for Medicaid, but not enough for any where that isn't a 'shared' living situation. And, yes, she's had this paranoia for years - she divorced my step-father because she firmly believe that he was trying to kill her - and had placed 'bugs' in the electrical outlets to spy on her. I listened to all of that talk for a long time and she finally left him - I said maybe that's for the best - your safety is your priority, however, knowing him, I highly doubted the validity of the stories I was hearing - he thought she was crazy when she left - and called me to discuss. I told him at the time she believed he was trying to hurt her and it maybe was for the best they separate. He was hurt and stunned that she went that far ...it's a long and sordid story but it does say something to her mental status - I think the instability has been a recurring theme in her life for a very long time.
I'm grieving - I feel like I've already lost my mother - and in a way I have. I'm very sad and am glad of you ladies out there listening. Thank you for your supportive comments...and yes, I'm in the front seat now of Mr. Toad's Wild Ride and I'm feeling carsick. Hope it doesn't last too long :(
In terms of "making too much for Medicaid", if you are ever in a position to offer advice to POA, there is an instrument called a Miller Trust which can be set up by an eldercare attorney. The excess monies each month go into a shared income trust which reverts to Medicaid upon death. It gets mom under the income limit and she qualifies. So, something to think about.
It sounds as though you've been supporting your mom in her decisions for a long time; it must be devastating to realize that this may have been schizophrenia or another mental illness for a long time.
You might want to consider some supportive talk therapy while going through this terribly rough patch of yours and mom's relationship.
Hopefully, she'll get stabilized on meds and recognize you for the absolutely fabulous daughter that you are and always have been.
I'm sure they'll do the very best they can for her - but if you're familiar with hospitals and I am - everyone should have an advocate when they're an in-patient. Most often it's a close relative, but in this case there's no one else. I'd like to know what caused her mental state to go down so quickly yesterday - what a change from her status on Friday - she was loving and seemed genuinely interested in getting out and into a situation where we would both be happy - in a home with other ladies so she can crochet (and she told the nurse, somewhere with nice people so she can bake cookies)...at any rate it was an unexpected decline in her mental status to the point that she thought I was trying to poison her. And apparently today nothing has changed. I'm worried sick about her...
I will call tomorrow and see if there is some counseling available for me to talk this out with a professional - I recognize that I'm coping with a great deal of stress right now - my inability to focus on my own priorities right now is a clear signal to me that I'm overwhelmed trying to process my grief - I don't know how else to describe it - it feels like I'm grieving for my mom who hasn't passed yet. Does that make any sense at all?
The person you knew is gone. Imo, you HAVE to grieve for that loss, or you can't do the work of getting this new person care, because you're always looking for that "partner" person who, at least in my case, is the one who taught me how to read med labels, how to fight with an insurance company and how to be nice to medical secretaries. Does that make sense?
Today was the meeting with Social Workers, her doctor and the church elder who has her medical DPOA. They discussed levels of care for her discharge - NH, AL, or group homes. They did not feel she's medically in need of a nursing home; and probably could not afford assisted living - so the group home was described to her and to my amazement - my mother said that situation sounded great! Someone to do the cooking, cleaning and manage her medications - of course there was no mention that she'd be sharing a room with up to two other ladies.
I'm going to go on Wednesday (along with the church elder) to view two places nearby - one of which he already supports an elderly lady by taking her to the dentist, etc. - she's 90 and lives at a group home that focuses on 'memory care'. I think that might be a better fit for mom than one that does not - because her memory is gone.
She forgets everything from one moment to the next.
At the end of the discussion we stepped out in the hall and they explained to me that mom's mental issues were 1)Dementia and 2)Delirium. Her delirium is exacerbated by any medical issues and caused the behavior I've been seeing. Her dementia will continue to worsen with age and the delirium will come and go as her health changes - if she gets an infection, if her blood pressure isn't well managed, etc.etc. So anytime her health gets a little askew she's going to go nuts basically and will lash out at whomever is nearby.
The SW's, et al (there were 5 of them) seemed very supportive and have a great deal of experience/familiarity with our situation. They were very pleasant and when it was all said and done, unbelievably everyone was happy. Especially my mother!
It eases my mind a great deal to see her doing so well. She appeared to look better and feel better - was sitting in the chair - not in bed thankfully - than I've seen her in a while. She was quite childlike though and didn't remember a lot of things (like she told me yesterday this church elder wouldn't be coming, but I disagreed with her...and she didn't remember that we'd even talked about it; she gave me her credit card and she thought she'd lost it - had the nurses looking all over the room for it - I reminded her that she'd given it to me to take care of)...She's just really forgetful, but at least not making accusations, etc. She did however spend the first 10 minutes of my visit telling me what a b*tch the lady in the previous room (she was in a shared room with another patient originally - and the lady complained about how loud my mother was - so my mother was moved to a private room to get her away from that lady)...so she went on and on about what an awful person 'she' was..
That's a familiar story...my mother never likes anyone for long. My worry is that she's going to behave the same way at the adult foster home and she'll be begging to leave - oh boy :( How many times will we have to move her until we find the right fit? The SW's warned us today that 'could' happen...so be mindful of that...
At any rate, my husband is having surgery later this month so all of the moving furniture out of her place, dispensing with everything and getting her settled with clothing and personal items needs to be taken care of by then. Now I have about 3 weeks to get this straightened out...my son and others have offered to help - and I'm going to take all I can get to get mom into the best place. Hope it all works out.
So, nothing has changed...mom complains constantly. She hates the food, she hates the people, she hates the AFC. She cannot afford to move to a nursing home or assisted living facility - I've searched and there is nothing in her price range. She's even asked me if I'd pay the difference if she could get into one of those 'nicer places'. However, I don't have that kind of money - to pay somewhere around $4000 a month for her to live in another place.
The only other AFC's I've contacted are between $5000-6000 a month - and have waiting lists. She does not realize how lucky she was to have found this AFC that has a reasonable monthly rate that she can afford. From what I've seen the lady is kind but not overly hovering or meddling; she tells me that she prefers not to mess with residents things - I had to specifically ask her if she'd help my mom put away her clothes - mom just couldn't seem to get it done. I'd already put things away - put she'd take them out and leave them in a pile of chaos...
Oh well...here we are back at the drawing board. She's even mentioned moving into my house while I'm away - the water is turned off, the heat is down, the cable/internet are shut off - basically it's a house closed for winter - with stairs; but that's not in her ability to comprehend.
I've asked her, if she were to find a suitable apartment how is she going to afford to have someone come in to stay with her around the clock - doctors have already said she cannot live alone - does not have the mental capacity to make complex decisions - and that's when she launches into ' I do not have dementia' I'm perfectly capable of taking care of myself!
The doctor is going to have to discuss with her. I'm at a loss as to what to say to her - and refuse to argue with her about it. I've already told her she cannot safely live alone - she doesn't drive, she thinks church people are going to come over and take care of her (they will not). They visit a couple of times a week - but they are not offering round the clock care services.
She can't even take care of her possessions at the AFC - how in the world would she manage an apartment?
The AFC Manager sounds a gem, really experienced in her work? I should lean on her expertise and advice heavily, if I were you. And stop worrying about the possibility of your mother's moving into an apartment, and how it would work... There is not a snowflake's chance of that happening. It just isn't a scenario you have to consider.
And so it goes...she's certain that her mind has restored itself to full functionality - however she cannot bring herself to ASK her caregiver to heat up her food or to give her a second portion of food (she always says the other ladies get bigger portions of chicken or whatever they're having - although it's not due to the fact that she doesn't eat very much at any meal; and she complains constantly about the food being no good)...but she wants a larger portion??? She also feels that the caregiver there does things to 'spite her' - such as mistakenly giving her two cranberry supplement tablets instead of one. It could very well be that the lady has made a mistake or two - she is on a great many medications each day - I'm not sure I'd get them all correct every time either! So I've asked the doctor to have the pharmacy send over blister paks of all of mom's meds - that should take care of that (he agreed to do that right away - easy)...
However he isn't sure what he's going to say to her about her mental status - he doesn't want to upset her -well I don't either - but she appreciates the truth and would rather hear the truth than some kind of beating around the bush.
I hope she will accept what he says as being for her own good and stops this pursuit of an independent living situation where she will be alone and in a dangerous situation - handling her medication, preparing meals and cleaning up after herself - all out of her realm of comfort.
I hear what she has to say on the phone every day - and she has trouble remember people's names, events, and other details. Often filling in the blanks with information that isn't really true - confabulation they called it at the hospital. Some truths but some not so truthful things. I've compared notes with the lady who visits with her regularly and some of the things she says are based in truth - just twisted around somewhat (or a lot) to suit the listener...Always trying to negotiate to get what she wants. I'm sure it's exhausting.
Now she's convinced that the caretaker is trying to poison her or make her sick. She is also concerned that by contacting APS (who arrived at the home today and spoke to the man up front - the caretakers partner) and told him why they were there before speaking to my mother - that the caretaker lady is going to be furious with her and will retaliate by 'taking her revenge out on her' - possibly harming her - she said, ' she may hit me in the head tonight' - I want you to know that this might happen so you can contact the authorities to investigate my death.
When I spoke to the caretaker yesterday she was very kind, answered my questions appropriately, did not sound angry or upset - and the very next day the meds were delivered as requested - all in the dose packs to mom. But she persists in this manic ' now what about all the months I've been here and she was giving me my meds in the paper cup????' What about that????
I asked her, mom, what can I do? What would you like for me to do?
I want out of here! I'm not safe here! I have to get away from the caretaker!!! I'm in fear of my life here!
The other lady was there today when APS arrived and my mom was so paranoid that the caretaker would overhear their conversation through bugging devices (?) that she insisted that the only place they could converse was in the bathroom (mom did not tell me this, the other lady who was there did)...
She told the lady who was there to take her groceries, and clean laundry that she may have to call 911 tonight if anything happens..
The lady who was there was able to briefly step outside with the APS lady and they asked her if mom suffers from dementia - yes, she said she does...and at this point her mind is really bad - she was unable to remember today what several of her meds (that she's been taking for years) are for. I told her that she gets meds in the evenings that do not come in the dose packs - she wanted to write them down - but couldn't remember how to spell them - she also couldn't remember what they were for - she's been taking these same meds for a very long time - but she said, to be on the safe side, I need to write this down and I need to know what it's for. She has a list of all her meds in her purse (I think)..or did...but can't absorb all the meds on that list or what's given when.
I don't know that it would do any good to contact her doctor at this point - he's scheduled to come back to see her around March 1. In the meantime, I fully expect that she will be calling EMS to go to the ER for an evaluation. Perhaps they can do another workup there - I have also wondered if this is a ploy on her part to find a way to get out of the AFC where she's living - she absolutely hates the place but so far we are unable to find anything else she can afford or that would be suitable. The doctors already said she's not sick enough for a nursing home and possibly not for assisted living since they're usually large places that require some level of independence. The last AL my mother was in she hated - didn't like the food, the people, the staff...nothing is every 'right' for mom. And even if it appears to be initially - she finds fault in every situation - with everyone.
She told me and the other lady who has been so kind to her - that we were both stupid for not being able to understand the issue of the meds being administered in a cup for all these months...
No idea what to do about this mess...