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Mom Sent to ER, Held for Observation, Now What?!
Mom, 78, lives in Arizona with her SO. For the past 4 years, she has been showing signs of cognitive impairment, but has absolutely refused to see a doctor. I am her only child, and I live in Minnesota, so only get down to see her once or twice a year, and have to rely on mom or her SO to give me the details of their day to day lives.
When we were visiting in November, I could tell that her memory and confusion were progressing, but the two of them seemed to be holding it all together; she dresses and cleans the house, they maintain the outside, take care of the dog. Mom was not eating well, and had lost a lot of weight.Would not hear of going to a doctor. Would drink a martini at "happy hour" go on a crying jag, go off to bed. Wake up like nothing ever happened. This, per her SO, was typical behavior of late. I asked her SO to quit buying her vodka.
This week, her SO took a trip to California to visit his son, and mom refused to go with him. Then all hell broke loose.
First she called me in the middle of the night, because she could not find her SO. I reminded her he was in California, she calmed down and went back to bed. I called her the next morning, she had no idea any of this had happened. In the afternoon I get a call from my aunt (her sister) that mom had called her, hysterical that her SO had left with another woman. She thought she was talking to me. I called one of mom's neighbors (who has a key to her house while SO is gone) to check on her, and she said she had gone to bed, she did not want to call me, she was fine, leave her alone.
I talked to her the next day, she sounded great! Happy, bubbly, knew SO was in Cali with his son, had gone shopping, bought a new plant...sounded really happy and calm! I was so relieved!
Yesterday I called when I got home from work and she answered "Hello, daughter. A fire truck just pulled up outside the house! There's firemen at the door! I think I'll keep them! I'll call you back!" and she hangs up!!!!
I frantically called the neighbor, who confirms that the EMT is there, that someone had called them (come to find out is was another neighbor who said she knocked on their door, hysterical that she could not find her SO, and was wandering in the street). EMT calls me, says they're taking her in to the ER for tests - did she have a dx of dementia? No, she does not, maybe this is her opportunity to be seen, tested; my opportunity to get some guidance. Per the EMT, she thought the year was 2002, she was from Canada, and did not know who the current president was.
Her SO will be home this afternoon. I'm waiting to speak with a doc at the hospital to find out what's going on - I want her to have a neurologist exam, I want her to have some drugs before she gets released. I could only speak with the nurse last night who said scan results ruled out stroke, clots, tumors - urinalysis is clean for UTI; there is no "medical" reason for her confusion.
Because it's dementia. Her mom had dementia. I need her to get a dx NOW, while they have her, because once she's released, there will be no getting her back to a doctor. I can't make a trip to Arizona until the end of March because of work, her SO is not going to be capable of caring properly for her. SO's son is going to hire a home health aid to come in a couple times a week to help with meals and assess how things are going. What else should I be doing??? What should I expect from the Doctor today? What can I reasonably ask them to do? Can I get Power of Attorney without being in Arizona or do I have to wait until I can get to Arizona? What can I do now to feel like I have some control, and not so much like a shitty, useless daughter?
Financially, all she has is her social security and medicare, but no assets besides her car. I told the SO's son they could sell that to help pay for some in-home care, but it's in her name. I'm not authorized to make any decisions on her behalf.
Sorry this is so long. I just don't know what to do.
I'm sorry this horrible disease has happened to another good person. It is likely that you can no longer get a POA-those are given to a person the loved one chooses during a time of mental clarity via a lwayer. A reputable lawyer will not process a POA if the client cannot understand what they are being asked. You may have to look into getting guardianship. Get a lawyer now and talk to them about your options.
As for the present hospitalization- talk to anyone and everyone you can at the hospital-doctors, social worker, chaplain-and tell them the situation and have them dx your mother. Teell them her mother had dementia. Tell then the memory and abilities decline has been going on for years, etc. You need to have a dx to get guardianship. Or in the future you will not be asking your mother to go to the doctor- but you will have to force her with lies or promise of rewards.
As you can see, her SO will no longer be able to leave your mother alone for any length of time. It would be best if they lived closer to family so others can step in to help. Read the book, The 36 Hour Day, and other books on dementia. There is a different way to communicate and care for people with memory loss. We usually can no longer treat them as we always have in the past-but must take into consideration that their short term memories cannot be retained. There are ways to preserve their dignity, calm and well being, but we have to learn them. We often have to use medication, fibs, light therapy, declutter, routines and safety devices-and a lot of patience and hugs.
I survive with my well being intact by taking on problems and issues one step at a time, one day at a time and doing what must be done without looking back at what is lost, but by what is still there. How can I make my mother safe, happy/content and feeling loved?
Good luck! There is a steep learning curve and you took a good step today by joining these forums. Read as many posts as possible because there is a lot of good information being shared here by people who are walking the same path as you.
I can only say that what you described is how things started with my mom. The only difference was that my mom understood that something was wrong because at that time, she still had a bit of short term memory. She also knew how uncomfortable she felt when her mind was "playing tricks on her."
There is very little you can do if you are not there. It sounds like her SO is not your father so without that tie you have even less control over what happens. My feeling is that you can take the time out of your busy schedule to check on your mother, get paperwork in order, etc. or you can just let things play out.
I know that once my mom was in distress and hundreds of miles away, I had no choice but to fly there and get things under control. I moved my mom closer to me, but of course that doesn't change the fact she will never get better, but at least I know she is safe and cared for.
SO = Significant Other...they have lived together for the past 20 years but are not married. He is 79, and in not much better shape than mom. Not capable. I am going to need to get her up to Minnesota. I don't really have the means to make frequent trips to Arizona... Both my husband and I need to work - I can't afford to lose my job. I work 6 hours a day away from the house, - and another 3 from home in the afternoon. My boss would be understanding - that's not the problem. But I don't get paid time off, so if I don't work I'm not earning.
Still, I know that I will need to get down there and get her. I have no freaking idea how that's going to happen. Nor what to do once she's here. Maybe it's better to get her into a nursing home there until I can get her set up here?
I feel awful for you. I was there! I live in NY, mom was in FL. Mom was a mess for awhile. Also self medicated with martinis. Also cause a lot of drama where she lived.
There are just no easy answers. It's a terrible disease - for the caregivers. Mom is blithely happy. Has no idea what's going on.
Good luck to you.
LaLu, I know you are in a difficult situation, but honestly it might be best to get her to Minnesota sooner than later. The fewer moves your mother makes the better. Especially if you know that the SO isn't really making good decisions on her behalf. (apparently not a great decision to leave her and visit his son, was it?) I agree with everything Tess had mentioned. As well as second Stringerbellsmom thought that testing is imperative.
Sadly, this situation with the EMT being called is probably the best thing that could have happened. For me, it was my dad getting pneumonia and stuck in his bathtub, that allowed medical help and subsequent follow up diagnosis. (His girlfriend was insisting he was fine, didn't need help, and I was the bad daughter starting rumors for suggesting otherwise.)
Just wondering, but would she be able to get on a plane and fly to Minnesota with help? You can ask the airline to provide assistance for the elderly. In this case, I would say, "Hey Mom, I think that was great that SO took some time to go visit his son. I'd like you to do the same. Can we plan on you coming to visit me?" That, at least, might be a way to get her to Minnesota, without the expense of several plane tickets. Don't know if her condition would allow that at this time, just a thought.
It sounds like her SO is a decent guy, and you have a good relationship with his whole family. (Fabulous) He's been a real champ to hold things together for her to this time. But from personal experience, I always have a slight knee jerk reaction to SOs. I hope he understands that this is a long haul process, and decisions should remain family business. I don't mean to discredit the relationship they shared. But that relationship is on it's way out. It's important to acknowledge where these difficult financial responsibility and medical issues need to land. Since you know he's "not capable" it's best that her daughter takes on this role.
Thank you for sharing your experience- as I am reading everything possible, I feel like moving mom up here is the ONLY answer. It's too late for POA - she is going to need a Guardian, and that is going to be me. And I can only do that from here.
I'm still waiting for the results of her MRI and her Neuro consult. My hope for the immediate is that they dx her, give her some drugs, and she can be released home where her significant other will be back this afternoon, and her dog, and all things familiar and comforting. He will be under strict orders to replace vodka with H20. I need her to stay in place for a bit until I can get things ready here for her, then work on getting her guardianship in MN and go from there.
But to talk to her today, totally out of touch with reality...I feel like I have to jump. Maybe it's my own panic at the situation. I just can't keep flying to AZ - so I feel like I need to be ready to move her when I do go. I keep second-guessing though. Feel like I'm in indecision quicksand.
I just can't believe how bad she has become since Thanksgiving! We weren't even near this point. At least, I didn't think so.
His Daughter, I wish she could fly on her own. Even so, my home is not set up for her, and that will take a little doing (our spare BR is our office, so there's really no guest room). And then figuring out who will watch her while I go to work. And the very first hurdle is prying her away from sunny AZ to move to the frozen tundra.
Please correct me if I'm wrong, but I feel like my plan should be:
1. Get the DX today
2. Ask if they will prescribe whatever meds would be helpful (Alz drugs? Anti-anxiety?)
3. Get her out of the hospital and back to her home with SO and Dog
4. Work my a** off to get a proper set-up here
5. Figure out how to get her to move up here and then
6. Fly down, no later than end of March to get her, whatever stuff she wants, her dog and then
7. Get guardianship in MN - then take it from there!
Does this sound realistic or am I missing something?
Thanks in advance to you all. I'm not a big crier, but today I'm finding myself sometimes level-headed and periodically in a pool of tears.
First, I don't think its fair to just go oh family taking over now to the SO. He has been part of her life for a very long time. I feel it is dismissive to do that. Oh since they didn't make it legal, its somehow less. Lots of people don't marry. Benefits, children, homes. And I think it was nice the SO went to see family. Good for them. Would we say their relationship was on the way out if they had a marriage certficate. Would we say that of a married couple who had been together for half the time? 20 years at that age is a long time and to have found each other is very sweet.
And as with most people with ALZ/dementia you don't know what problems will come up until they do. Can't anticipate everything.
Other things to consider, is she contributing toward their home- rent, electricty, etc. Will she be leaving the SO with issues in that regard. Its about your mom, but its also about the relationship and understandings she has with this person. This person also matters and seems to have been doing pretty good considering. What about the dog, the yard, the SO meals. Is house own or rented, in whose name, is her name on lease or mortage or other joint bills, joint accounts. 20 years is a long time to dismantle a relationship, and to swoop in with no regard for the SO is not fair. That person deserves more respect than, well that relationship is ending anyway. We have a whole forum message board on just that issue, and paperwork isn't as important as the relationship they had. I find it disrespectful to be so dismissive of it. Many unmarried couples treat each other better than many married couples.
I guess I am just really bothered that because they weren't legally married that their relationship seems to mean so little. 20 years living together is huge and a commitment and a partnership. The SO may be ready to be with his family but don't just move mom and leave that person in the lurch. If they were renting together, he could lose the home if he can't cover the rent alone. Is her name on the lease? Can she just get out of that lease? More to it than just mom's side of this. She cared for this person and this person counts. I guess I don't have that same knee jerk reaction when it comes significant others. Not all "boyfriends and girlfrined" are family, but many many many are. And they matter. Its like saying, married couple first even if you hate each other and are cheating, loyal unmarried couples, eh
MN Chickadee, thanks for the advice and offer. I am in Minneapolis. I will give the hotline a call.
GubbleBumm, the SO will be home this afternoon. I completely get what you mean about swooping in, and will include him on decisions. Mom has zero assets. SO is fairly well-off, the home is in his name, she contributes her social security to the household (though mostly to plants and flowers for the yard). I just can't see him being fit enough to take care of her for any length of time. He isn't in the best health - which is why his son is arranging for home help to come in. I know he would be lonely without my mom and without the dog. If I leave him to care for her, and something happens I'll feel responsible.
I guess right now all I can do is talk to everyone involved and find out what they would like to do. Until a dx, we're all just spinning in the wind.
Your post title sent up red flags for me, so before I read through the thread, I wanted to quickly post this info about the difference between a hospital observation and a hospital admission in terms of what Medicare will pay and what your Mom will have to pay:
Oh yes -- the outpatient admission for observation. My mother and I got bit on the heinie by that very thing five years ago. Watch out for it. Not only was the month spent in a rehab/SNF out of pocket because of it, but I got a whopping hospital bill on the Part B copay, including hospital charges for medications and supplies we could have brought from home had we known she was not truly admitted.
About the SO, if he is at all willing to help out with her care, even to the point of being there for her if she is admitted to a facility near where they both live presently, take him up on it. He deserves the courtesy that would be given to a husband.
LaLu, I think your plan sounds very reasonable. Take a deep breath, I know those panic feelings when all this starts. But it sounds like you're doing the best job you can to plan and prepare. No one, and no plan, is perfect right out of the gate. And it sounds like SO will be there until you can get to her in March. I really hoping that her doctor might be able to offer you some insight.
In my case, my father's girlfriend, of 20+ years, (sorry I won't use the term SO, I find it meaningless. Either you're married or you're not.) was hiding his condition in any way she could. When I tried to get my father medical help and attention, she started in on Dad saying I was the bad daughter starting rumors and there was nothing wrong with him. Ok, so fast forward (4 years later) when he was hospitalized for pneumonia. The ER did a CAT scan of his brain, checking to see if he'd hit his head on the bathtub when he got stuck. (They were looking for any small bleeds in this brain) What came back was absolutely astounding. When I finally saw the neurologist, she said from looking at this brain scan, she would have assumed I was bring him in in a wheelchair. She couldn't believe that he was still walking and talking with that much damage. (But hey, good for the girlfriend, as she hosed him privately for tens of thousands of dollars over these years. Bitter?? Ya just a little. She was not married to my father, and had absolutely no business being involved with his condition.)
So this whole background story, tells you why I'm hoping that her tests will give you some important information. Talk with all her doctors. Ask for copies of all her tests, hospital admission, hospitalization reports, including her MRI written report, and that her scan is put on a disc. This will all be very helpful to the doctor(s) you work with in MN. This is much easier to get when it's fresh, and not stuffed in some file in the basement. But again, these reports will be very helpful and give your doctor in MN a good starting point to continue her care.
Once my Dad was diagnosed, his doctor started him on Aricept and Nameda. It did take a while, but I do feel that these drugs helped him. So don't expect to see improvement over night. And of course, they'll test her for things that can mimic dementia. Look for vitamin deficiencies, thyroid, insulin, etc. So hopefully they will be able to give you a starting plan.
Please ask people you trust in your city, for the name of a good doctor for dementia problems. I got lucky and the geriatric internist I worked with was as good as gold. That man walks on water in my mind. A good doctor will be your best ally.
Keep coming back LaLu, we're all here to support you. You will get through this. Just go ahead and cry if you need to.
LaLu-What a terrible situation all around. Parts of this sound very similar to the place I was exactly 2 years ago minus the SO which adds a whole other layer of challenges. When you talk to the doctor, please ask if they have ruled out a vitamin deficiency and hypothyroidism; these can present with symptoms and behaviors similar to dementia and can come on rather abruptly. You might ask for IV tx (B1) and B12 immediately until the tests come back given her "happy hour" behavior and poor diet just in case. This condition is treatable early on and you might get some improvement in cognition and function- so you want to be absolutely certain this isn't in play. My dad presented similarly. While I had noticed some memory glitches over the years and been met with a wall of denial from my mother with their joint mantra "it's a normal part of the process of aging"; then the feces started to hit the fan. My mother got sick and nearly died on dad's watch 2 years ago this month. She was in liver failure and the color of an uncooked egg yolk, confused and sleeping 20 hours a day. If a neighbor hadn't seen her sleep walking through Publix while dad rested on a bench outside she would be dead. I got the call from the hospital and flew down. I got things stabilized and put a plan in place for their return north from FL. Their return was delayed by the diagnosis of a recurrence of his prostate cancer and when I finally saw them in early July dad was in much worse shape. In August, mother and I attended her sister's funeral in Boston leaving a neighbor to check in with dad. Dad had been to the local small town ER the week prior because my uncle thought he'd had a stroke after talking to him on the phone. The local ER cleared him and gave a referral for a neurologist scheduling 6 months out. Mother returned to something that looked like a crime scene- he was confused, disoriented and convinced he'd killed someone who had been looking in the windows at him. We got into the car and drove north to PA where I live. I'd already contacted the Penn Memory Clinic for an appointment, but dad was so crazy acting we decided to go straight to their ER instead. He was admitted and eventually diagnosed with both Alzheimer's and Wernicke Korsakoff's. Had he been treated promptly, we might have been able to preserve more cognition with a program of thiamine supplements and abstaining from alcohol. It would be sad if you had to separate your mother from her long term partner. But safety comes first and he has already demonstrated that he either can't or won't take proper care of her. Perhaps he has cognitive issues of his own that are impacting his ability to make rational decisions. If he and his family are willing, maybe he could move with her to a AL or CCRC nearer you. Otherwise, I don't see anyway you can leave her in his care despite their relationship. I wonder if it makes sense to get an elder care attorney in MN to start the guardianship process and make the transfer into a MC unit from there. Some of the national care chains will do the assessment at one of their locations in AZ for enrollment at one nearer you. If she's been admitted for 3+ days, you might be able to advocate for a rehab stint while you do the process of arranging a MC placement since it doesn't sound as if you can care for her in your own home at this time. I moved my parents back to PA because that's where I live and I'm their only surviving child. I toyed with leaving them both in FL, but my dad's inability to advocate for my mother was a risk I wasn't willing to take. SO's children needs to understand that they can not count on your mother to look out for their dad should he develop physical or cognitive issues. Good luck. HBhttps://academic.oup.com/alcalc/article/44/2/148/185585
UPDATE: STILL NO DX on mom...she is still under observation with Altered Mental Status on the record. The hospital in AZ will not release her to her boyfriend, who is now back home and willing to take her. I do not have guardianship, or POA, either in AZ or MN. Mom has only her social security and medicare, with no means to pay for any of this. I told all of this to the social worker who suggested I try to get her released to a group home in AZ, if I can find one that will accept as little as 1200.00 per month (until I can get her medicaid).
I might have to do that for the short term, until I can figure out the how-to's of getting her established in MN. I won't be able to afford much in the way of legal fees. This really bites.
What happens to people like my mom who have nothing, and don't have rich children?
My other thought would be to fly down, get her released to me, and drop her off with her boyfriend. He wants her there (not sure that his kid is so crazy about the idea) but it would only be so she could have comfort and familiarity until I can get things sorted out.
I'm really lost. Heartbroken as I've lost my mom too, in all of this. My mom is gone.
Thank you, MissHer. The social worker seems like she wants me to do everything from here. She emailed forms to apply for AZ Long Term Care Services - and I can't fill them out - it even says on the cover sheet that the social worker would need to help my mom fill them out! It has to be signed by mom in front of a witness, so how the SW thinks I can fill this out from MN is beyond me. SW also gave me a number for some Adult Placement Service guy, to see if he can find a group home that takes in patients with very little money and no guardian. Then the hospital could release her to the group home.
I called back today, nurse was going to have the SW on duty to call me (of course, no call ever came). Spoke to mom who is sad and misses her dog. She sounds more alert, but is still confused and desperate to get out of the hospital. And I asked the nurse if there was a dx, she said not that she could tell. I asked if I flew down there would they release her to me, and nurse said she'd have the SW call me on that.
If she's racking up a bill as an "outpatient", she's not going to be able to pay for it. What is the hospital going to do if I sit on my hands and do nothing? They are not going to want to keep her forever - what happens, do they place her in a facility? Do they get her a state appointed guardian? If she has a guardian appointed by the state, would I be able to get guardianship in the future in Minnesota?
This is only the beginning of advocating for your mom. It's a tough job. All you can do is keep at it and be the squeaky wheel that gets the grease.
I'm sure this isn't what you want to hear, but I think you've reached a point where you need to bite the bullet, take the time off work and go down to Arizona to deal with this in person. Trying to settle things from a distance does not work well plus it has to be incredibly stressful.
Dementia changes everything. It comes with family disruption and inconvenience and, yes, expense. We all wish it were otherwise but it is what it is.
TThe hospital could probably get your mom placed in a group home but it would not necessarily be a facility of your choosing. What if the move doesn't go well? What if something happens and she's hospitalized again? You really need to get her moved closer to you so you can manage things more directly, otherwise you could end up lurching from one crisis to the next and it will burn you out physically and emotionally. Dementia is often a long-term disease and you need to be able to sustain yourself for the long haul.
Look at it this way: If you became gravely ill, or your spouse was in an accident or your house burned down, you would find a way to drop everything and focus on what's necessary to get through it. This is really no different. I can't promise your stress level will go down to zero once your mom is placed closer to you, but the logistics will be easier and you'll be in a better position to deal with stuff as it comes up.
The social worker seems like she wants me to do everything from here. She emailed forms to apply for AZ Long Term Care Services - and I can't fill them out - it even says on the cover sheet that the social worker would need to help my mom fill them out! It has to be signed by mom in front of a witness, so how the SW thinks I can fill this out from MN is beyond me. SW also gave me a number for some Adult Placement Service guy, to see if he can find a group home that takes in patients with very little money and no guardian. Then the hospital could release her to the group home.
Having gone through your situation with my Dad in Missouri, the social worker seems like she is doing you a BIG FAVOR. She is going to get your Mom placed and set up for Medicaid. This with KEEP HER SAFE and GIVE YOU TIME.
Once she has been qualified for Medicaid and medically stable, you can arrange to transfer her to Minnesota, if that's still your choice. Because Medicaid will already be set up for her, it will be easier to transfer it to Minnesota than to start from scratch.
And most important, she is arranging to get your Mom away from the home situation with the boyfriend, which will otherwise end up on your lap.
Regarding the paperwork, fill it out as best possible and send it back to her to be signed in Arizona. this is not an unusual way of handling it.
In a brief nutshell try to talk to her attending doctors that you want her admitted. If she is admitted, she will be able to enter skilled nursing covered by medicare of a certain number of days,...30, 60 days or so.
You can explain to SO this is the best move to ensure she is medically staballized etc. This will allow him to arrange for /interview an in home aide and give you time to figure your end of it out.
You have to have her "admitted" in order to receive this medicare coverage. On the other hand, find out the details about how and when her long term care insurance works
A few weeks or a month in a NH will give everyone time to put viable plans together. Assure SO and your mom that this brief stay is medically necessary. A fiblet can be that this is a satilite (sp) building of the hospital
People can show their igly sides at times like this so be certain you get a written document fro the MD of his diagnosis. Ask the MD if he will be stating she can no longer manage her affairs. Can't live alone etc. Keep several copies for you and you along for now. If SO were to attempt to acquire POA for some personal gain you can fight him in court because a POA, as others have stated, cannot be assigned by your mother if she is cognitively impaired. Your MD letter will confirm that she is cognitively impaired. If she signs any legal documents on the date of diagnosis or therafter you can go to court to make the POA invalid.
My recommndation would be to place her in skilled nursing wehre she can receive medical over site on a temporary basis so that you and SO can figure out a long term plan. Can he care for her/is he willing to care for her, silled nursing near him so he can visit with the dog vs near you.
In other words there is not a rush to get her immediately to MN.
Please keep visiting here for support and ideas and resources.
One more thing. Are you sure she hasn't signed any documents assigning SO as POA? You do need copies of her trust, will and all other legal documents. While is is temporarily in a NH you can ask SO to help in getting those documents together and copied and sent to you...
I think its important to know what you need to do when you arrive in AZ. Many things can be done in advance.
I don't think you and your mother must reside in the same city or state (yet) in order to file for and be awarded guardianship. I have never done this so I'm no expert. As a guardian, you are not reuired to have her live with you so in theory, if SO were willing, they could remain together with all the right aides and other supports in place.
Just thought Id throw out some options.
Thinking of you
I agree with JJaz and bela,
I would not rush mom back to MN. She has probably lived in AZ for quite awhile and her life is there. It will give her the opportunity to see SO, as he can visit her. The SW is doing you a huge favor!
I'm going to leave instructions for my kids. If I live in AZ do not bring me back to IA! I lived there for a few years in the 80's. lol