Next Steps, I'm at a Loss

Brooklyn74

Hi All,

My heart goes out to anyone going through this. Thank you for standing with me, supporting me. I've written a couple of these discussion posts and gotten great advice, so I wanted to reach out again.

Just as a mini-bit of feedback. I now have two parents with what we think is dementia. My father no longer speaks or walks, and my mother is now starting to show confusion, major confusion. Her friends call me and ask if she's ok. I have no siblings and no family for help. My father has 24/7 care, but I am guardian.

So, my mother's tests are as follows:

MRI: shows small signs of aging (my mom is slightly nearing 80), but other than that perfect

Cat Scan: Perfect

Urine: Perfect

Blood Work (including Thyroid and Lymes): Nothing's wrong, Perfect blood work, doctor said she was healthier than he was.

X-Ray: Small nodule in her lung, asthma has been horrible. Doctor recommended MRI, which showed not much and doctor said nodule is nothing, MRI again in 1 year

and yet, her sense of smell is off (she used to have a super sniffer, and now her food smells like mold and she can't tell), She used to be a sauna and now she's cold all the time, she was complaining of bright light and blurriness but has recently learned she needs cataract surgery.

She went food shopping this past week, got home unpacked her groceries and low and behold her car was gone. One hour and a Police Call later, we find that her car was at the grocery store, and she got a ride home with someone. She didn't tell me this part until later though, and is still convinced she did it on purpose. She was walking home the other day near my apt and called me bc she didn't know which way to go (She's been here for 40 years, and she was already walking in the right way), She forgets things ALL THE TIME, but is lucid some times too, like yesterday which was wonderful. Although I still pay all the bills, do the taxes etc.

So, all in all I don't know what to do next? I saw the Geriatrician, my mother refused to do the evaluation, but after flipping out in the waiting room because the doctor was in the neurology wing, she talked to the doctor for an hour. She won't take any medicine (even though she said she may want to take a memory med recommended by the Geriatrician, Galantamine (?)..she refuses to see a neurologist (although yesterday she asked me to take her to one because she was very lucid and we had a real talk)

The geriatrician said a neurologist would not tell me anything she didn't tell me, but I keep thinking this could be something else, I don't know what to do.

I want it to be something else so badly. But I don't even know what other testing she could have done. (She was fine until July 2022 when things started to get odd from time to time, but by January 2023 it was off the charts)... functional cognitive disorder perhaps, but that still has no cure. I just want to slow this done, cure her, help her. I can't just sit here and watch her, watch this take over so quickly. Can it be anything else???

And lastly, I don't know what to do about her work. She gets asks by the Courts to weigh in on court cases. They email her and leave voicemails. She doesn't get back to either. I feel horrible not mentioning them to her, but I also feel bad no one responding to them. I am trying to protect her reputation. When people call looking for appointments, I do call them back and say she's not taking on any new patients at this time. But do I email the lawyers AS her and say she's busy at this time and can't help? Do I email them back as her securetary and say she's too busy at this time. But I feel bad because she would take the case, and the lawyers respect her because she shows she cares, what will they think if I say she's too busy, or I respond as her?

So I don't know what to do about that and next steps for doctors... I'm so just lost and confused, and don't even get me started on financials and investment properties.

Thank you to all who read that. I didn't think it would be that long! I pray we can all find some peace and happiness with our loved ones.

Quilting brings calm

Was her B12 vitamin level checked as part of her blood work? A low B12 level causes confusion. It can get so low that a B12 vitamin tablet does not help and monthly shots are needed. My step-dad is on those shots. Although he also has other issues and has been diagnosed with mild dementia too.

HollyBerry

I really feel for you - it sounds like you've done all the right things. Quick reply because I'm on my phone - one solution to the consultation question could be that she decides to officially retire. Nobody needs to know why. It gives you a socially acceptable answer that allows her to save face and not be put in a position to make mistakes. I think I'd start there and let the specialists and appointments pause for a bit.

MN Chickadee

It sounds like you have done what you can with the diagnostic process.

My mother lived with dementia nearly 20 years, but in the beginning it was undiagnosed. She reported memory problems to her doctor for YEARS before it was diagnosed. She underwent a full neuro work up with a lengthy assessment by a neuro-psychologist, a visit to a neurologist, and MRI only to have them tell her it was stress or this or that. She was the picture of good health and good habits and healthy living. One doctor suggested that maybe the tiny half a glass of red wine she drank with dinner was the culprit which seemed ridiculous. They had nothing to offer. She knew something was wrong but the scientific methods didn't show it yet. Her doctors called it work stress, depression, and mostly ignored it. Years later it became apparent both to a lay person and to the doctors it was Alzheimers and she lived into the final stages of Alz. If she had received a diagnosis earlier she would have retired and done some things differently, but instead it was a painful and embarrassing exit from her career and was left with little time to do any "bucket list" items before she got too out of it to initiate anything. I would consult an elder law attorney for long term care and financial planning with the assumption her condition will eventually be given a name, because it does sound like something is going on there. Sounds like she also needs 24/7 supervision so she doesn't wander and get into trouble. I would plan for the worst here and set up care and plan for the long haul. Get on waitslists at memory care facilities as a back up plan, perhaps they could go together under some therapeutic fib of it being temporary. Monitor the calls and emails from your - mother's professional contacts and respond from yourself saying she is not taking on new work at this time, they don't need to know why. Eventually they will quit calling.

Jo C.

Dear Brooklyn, I have also gone back and read your prior Threads. What comes across after reading, is that you do not have a support system in place and putting one together would be key to helping get all under reasonable control. This will be lengthy and for that I apologize, but there is much to share. PART ONE:

There is a lot to be thoughtful of and a lot to be done and some of it will be uncomfortable and you may not wish to do it, but we MUST be brave and do what is necessary. We are the only ones who can put matters and care into place and take necessary action as our Loved Ones cannot do this for themselves as their logic and judgment is compromised by damage within the brain. It is not always easy, but it is necessary and we are the protectors.

Our Loved Ones can have brief periods where they sound SO normal and lucid; we can be fooled by that which is not a good thing as they are highly compromised and will not stay in those calmer periods. It is like a light control switch that can be slid up and down; no matter what, no matter if a Loved One sounds "normal" for a short time, they are not; they are highly compromised.

First, if you wish to speak to a professional regarding the issues, the Alzheimer's Assn. has a 24 Hour Helpline that can be reached at (800) 272-3900. There are no fees for this service. If you call, ask to be transferred to a Care Consultant. The Consultants are highly educated Social Workers who specialize in dementia and family dynamics. They are very supportive, good listeners, have information and can often help us problem solve. Ask to be transferred to or given the direct number for the local Alz. Assn. office in your parent's area and contact them. You will want to ask about local doctors who specialize in dementia in your area, and also for a Social Worker referral who specializes in aging care who will meet with you in person to do an intake and provide you with information for helping services. The Assn. may also provide you with names of Certified Elder Law Attorneys in your area which you badly need. The Elder Law Attorney can meet with you privately to discuss your situation and also give you the name of a Financial Consultant or CPA who can help unravel and manage all the financials as well as investments and addressing all the tax concerns.

Once you have spoken to the Elder Law Attorney, (and be sure to ask about applying for Guardianship should that ever become necessary in the future), then you can meet the attorney with your mother for updating the "Estate Planning," if that is deemed necessary so all paperwork can be updated and put into place. Do NOT call it getting "Power of Attorney" or anything threatening - this is something I also learned the hard way. Estate Planning update is not threatening.

This is all part of building that Care Team that would give you direction, assistance and get things in order as much as can be. Things will continue to evolve and change and by having a good team to consult, it will help in many ways.

You mention your mother "seeing patients," and "consulting on cases," and your calling the multiple parties back and telling them she is "busy" so she can save face and dignity. It has gone beyond that and it would be helpful to put a stop to all of the calls which could continue to be a problem issue.

Does your mother have a dedicated phone for just her business calls? If so, I would put a message on it for a period of time stating that she has fully retired and is no longer available. If she does not have a dedicated line, I would answer calls by saying that she has "fully retired," and is no longer available. If you need to, you can even say she has "retired due to health reasons," but you probably need not say that. No need to continue to add this to your list of problems, it is easily fixed. Trying to save face far too long and far too often can manufacture a problem issue that need not be. Eventually, if not already, people will begin to glean there is a major cognitive/behavioral issue and that would leave much guessing and gossiping and even leave her open to legal action should things slip sideways. Best to just put it to rest as best can.

The next thing I would advise is NOT to talk to your mother by saying she needs to be checked for dementia or mental status or memory issues or whatever. I ran into this with my own mother and if i dared mention any such thing, she would become irate and dig her heels in and refuse all medical visits. SO . . . one learns to use, "therapeutic fibs," to get a Loved One (LO) to physician appointments, etc. Such fiblets are a good tool in a Caregiver's toolbox. A good Neurologist can be seen for spinal issues or mobility issues, or for a host of other reasons; perhaps her primary care MD would "refer her" for anything - my mother was "referred" for her back pain and blood pressure which her primary fibbed and said that Neuro would know how to manage the issue that was contributed to by a specific area within the brain. Therapeutic fibs are NOT a moral lapse, they are a kindness for our Loved Ones, they save meltdowns and gets them to care and services badly needed and also can be calming.

A good Neuropsychiatrist could also be of good help; you can choose between that and a Neurologist who sees dementia patients as a routine part of his/her practice, getting her to NeuroPsych would require more fiblets and would of course be for other reasons such as hormone levels within the body that cause change with aging, etc.

A big issue: Your mother CANNOT continue to drive or have access to a car. She is far, far beyond that and is a danger to herself and others. The car may be "broken down" and in repair which means removing if from her sight; it takes forever to get parts in due to them coming from other countries, etc.

If she continues to drive and causes an accident, our society is very litigious; she may well be sued and if there are injuries or loss of life, she could lose everything. If she breaks a law she could even be arrested if people came to harm. I say this because it has happened to others who have been on this site. One man with dementia ended up in jail because he broke a traffic law, crashed and caused injury to others. And not that long ago, a Member shared with us that SHE was sued as well as her LO, because her LO was still driving and caused an accident and that the daughter knew of this dementia issue and failed to remove the car. SO, please work to get this taken care of. You can also report her anonymously to DMV informing them of her dementia and let them either retest her or suspend her license - they need not mention you if you request confidentiality - you can check with your local DMV regarding their policies. The doctor's office can also make such a report if asked, but many of them prefer not to do this.

Building a Support Team:

A. Dementia specialist either a Neurologist who sees dementia patients as a routine part of their practice or a NeuroPsychiatrist.

B. A Social Worker who specializes in aging to meet with in person to screen needs and format plans of care and getting contact numbers for referrals.

C. Certified Elder Law Attorney

D. Financial Consultant and/or a CPA for financial guidance and tax concern

E. Contact with the Alz Assn Helpline for support and possible names and contacts for helpful entities

AND . . . building a social network . . .

Search for and ask the Helpline for names and contact numbers for Dementia Support Groups in your area. It is amazing how much good information and support can come from these groups who have Members farther along on their journeys and have all sorts of helpful information.

Jo C.

PART TWO: (was too long to Post as one message)

Also, if you belong to any place of worship, they may have assistance through some of the congregation who work with persons with needs as support, companions, care aids, or may have emotional support groups that would be helpful for your own stress as well as having social events your could join in for your own social outreach.

You mentioned not having family; if there are friends, this is not the time to hold all of this a "secret," but to make contact and let others know there are issues that are being addressed and hopefully there will be support and understanding for your mother and you.

AND . . . lastly but not least, if here are adequate funds to do so, there are Certified Geriatric Care Managers who can be hired to step in and do an in-depth assessment of needs AND who can manage all sorts of care issues on an ongoing basis; they will hire and manage care aids, they will build support services and can literally do as much or as little as you wish. If I were hiring such a person, I would choose one who was either a licensed Social Worker or RN, and who had a year or two of experience. There is a professional assn. for Geriatric Care Managers, but not all GCMs belong to it, so you can Google this service for your area.

Use Google and ask, "What Is A Geriatric Care Manager" This site would not let me put a link in for you; I am sorry.

I am sure I have left things out and probably gave too much input re other things not interesting, but it is a start. I do send you very best wishes for beginning to put a Support Group together, may this begin to turn a corner and bring much needed assistance to you.

J.

M1

Hi Brooklyn. Jo's post covers a ton of territory. I haven't read it in detail, but: do you have power of attorney for her, too? Because it's pretty clear you need it, would agree that taking legal steps is first order of business, right along with necessary steps to ensure her physical safety. You will need POA or guardianship to effectively intervene on the driving and the work issues. That said: do you know any of her work colleagues? Because if you do, I would take the step of calling them and having a frank discussion even without the legal pieces in place. Based on what you've said, I would lay money that some of them at least are already aware of issues and what you say may be confirmatory. You didn't mention her profession, but if she is a licensed professional, continuing to work when she's clearly incapacitated could have huge liability issues too, both for your mother and for whomever she is consulting for.

I am so sorry you are in this position. I hope others will chime in, too. Very hard to intevene with fiercely independent people, I know that first hand.

Pat6177

Brooklyn, my heart goes out to you on so many different levels. You have been given some very good advice. So I will only chime in on a few things that haven’t been touched on.

Grief. There’s this process of anticipatory grief. It means that your grief has already begun as your father has lost his personhood. And as your mother is losing her skills, you are starting the process of anticipatory grief for her as well. What it means is that you are grieving for a drawn out period. Grieving is different for each person. I just wanted to give you a heads up that the grief is part of the roller coaster that you are living through.

You are understandably overwhelmed. One of the things to consider to free up some of your time is reduce the frequency of your visits with your father. Instead of every day, go every other day. I realize this is easy for me to say. There may be issues that make this a poor suggestion but I encourage you to give it some consideration.

As far as the testing for your mom goes, has she been given the clock test, remember 3 words test and the MMSE test? If she has an annual wellness checkup under Medicare, then (my understanding) is that the clock and 3 words test are required. The MMSE is a set of about 30 questions that determine certain skills and this is done if there’s a problem doing the other 2 tests. These are simple tests but you’d be amazed how informative they are. In addition to testing memory, the clock test will show problems in executive function. Once my DH showed deficits on these tests, then the PCP referred him to a neuropsychologist to do the battery of tests to determine if he had dementia. Has your mother gone for the neuropsych testing? It sounds like the docs have ruled out most other possibilities. I do hope your mother will go along with the neuropsych evaluation.

A couple of things I’ve learned from a combination of my experiences and from reading this forum:

No one seems to think much of their neurologist (if they even have one)

Medical folks, in general, don’t understand dementia unless it’s their specialty

95% of what I know about dementia I learned from the people on this forum. The neuropsychologist gave us DH’s diagnosis and handed us a booklet about dementia that wasn’t even that useful.

Acceptance and gratitude will make this journey easier on you and make you a better caregiver.

Take pictures and take videos of your parents. See if your mother will talk on the videos so that you’ll have a recording of her voice. Maybe a video with you asking your mother what her favorite recipe is.

Sorry I got so long winded. Hang in there.

Brooklyn74

Hi Everyone,

I wanted to thank everyone for their advice. I will write to my mother's coworker and let them know she is too busy at this time to help, I will write them as me. I have so much I'd like to say about the amazing advice I've been given, but my mind is so drained today. I have reached out to a couple of care teams and I'm going to search for a GCM. I am working on the car thing, I understand what's happening. I have 2 friends I speak with often, but others are off having their babies and living their lives. The friends I do share with are hours away. I wish I could write more to the replies I've received but my soul is tired today. Thank you all from the bottom of my heart. Wishing all a peaceful Sunday.

Brooklyn74

If anyone could recommend a good Estate Planning or Elder Care Attorney, I would appreciate it. Any lawyer I have come across in the last several years regarding my parents and their health have been hell, pure just into themselves. My last lawyer left me bc and I quote "he has to worry about paying his bills and he wants more money that I won't be able to give him.". I need a lawyer with a heart, patience, and who knows what the hell they are talking about, somewhere in NYC would be great. Thank you.

M1

Brooklyn you might look specifically for a certified elder law attorney (CELA). There are a couple of websites that list them by location, the one I remember is nelf.org. You need someone who is familiar with the dementia and POA issues, not just estate planning.

Jo C.

CELA as M1 suggested has a listing of Certified Elder Law Attorneys in all geographic areas, it is a good start. Also, the local office of the Alz Assn may also possibly have names of Elder Law Attorneys that work in your area.

Do know that the attorneys are pricey; but the in-depth knowledge will save you a bundle as things progress. Most Members who have used such a specialist attorney have been glad they did as they were helped and also positioned well for the future. The CELAs have so much more specialized knowledge when it comes to the elderly and dementia and legal needs including future planning.

Your mother is a challenge and one does not know how the future will go, so it will be a good idea to ask the CELA to explain the process of becoming a Guardian if that should be possible some day. Knowledge really is power and keeps us informed for possibilities.

Brooklyn74

Hi All,

Thank you for the continued advice. I unfortunately, know too much already about guardianship, as I am my father's guardian. The issue is, every lawyer I've worked with has been a total unethical a-hole. I can't seem to find a good, kind, ethical, honest one that would actually stand up for me and my parent. My last one, said he couldn't work with me anymore because he wasn't being paid enough by the court, and he wanted more money. So any names for ones in NYC would be greatly appreciated.

Iris L.

It appears that your mom is working in a professional capacity. Since she is now incapable of performing in her professional capacity, it would be nice for her to be "retired". My suggestion is for you to figure out a way to make this happen, rather than just to say she is too busy now. There are probably a lot of loose ends that need to be tied up. Iris

Brooklyn74

I am trying to make her "retired" but it's hard. Anytime you say senior she flips out. I tell her that if anyone wants to give me a discount because of my age, I'll take it, but she always prefers to pay full price.

I cancelled her memberships where she posts for ad for patients, and I'm closing out court cases for her that she's worked on. I'm hoping that's it. I tell her to focus on reading and writing, two things she loves.

Iris L.

Brooklyn, you posted a month ago, and apparently you are in the same situation. Good job so far. Things need to be moved along more but you are having difficulty doing this yourself. What will happen next is that a crisis will occur. Then more steps will have to be taken. Keep preparing yourself. You sound young. You don't have to do this alone.

Iris

Brooklyn74

I really miss my mom. Losing my dad to this disease was hard enough, but it was slow, so we had time to laugh and talk. He was kind, and he loved me. I would look at him and say Dad, I miss you, and he'd say But I'm right here. And now, I go and sit near his bed, and kiss his face and hug him. But my mom is different. I woke up one morning and that was it. I wanted a holiday so badly today. To be in the park and have a bbq. She yelled at me half the time because her nose was running and she didn't want people to see her use a tissue so we had to go back. She was angry that I made it all about me, and I didn't understand she was upset. Now, were home and I'm crying and she looks at me, and says oh your sinuses too huh, not even noticing the tears streaming down my face.

My "mom" disappears more each day, she can barely speak without stuttering and doesn't complete sentences. I have so much happening in my life, I'd love her opinion on. I want her to help me bbq, so I'm not alone, because everyone one else has family or friends, and it's literally just me. I signed her up for yoga so I'll drop her off and go visit my dad and then pick her up and make dinner. I don't want to bbq alone. My garden is open and my neighbor can see me. She's very sweet but I'm so tired, I don't want to socialize so I don't leave the house. I've asked the contractor to build a wall.

Iris L- She had a mishap last week at her house, and it took me hours upon hours to get to her, I don't know if I mentioned it, so that's why she's with me now. I'm going to spend this week trying to find help for her, but what can I do in a week, and what should I look for? Her lease is up for renewal, I don't know what to do or who to trust. I can only find one nice assisted living place and it's $10K a month to start.

I don't want to be alone. It was horrible at the park today. Watching all the happy people, all the children with their parents who were actual parents. I smell a bbq outside, what I would give for a happy family. I have never been so scared of anything in my life. What do I do all alone? The pain is in like nothing I've felt before. What happens to my history, my present, my future? What happens to her accomplishments, her dreams? What do I do all alone? Now, I dream of dying of dementia, but unlike them, I don't have any family, or retirement money, so I'll die alone, wearing a diaper in a medicaid nursing home with bed sores and abuse.

M1

Brooklyn, i hardly know how to respond to such despair. I hope that is not how it ends for you, and i am so sorry you are feeling this low. You need some support for sure, there will be a way forward.

MN Chickadee

Please call the Alzheimers Association hotline, they may be able to help fiind resources. If nothing else it may be cathartic to speak to someone who understands. It's a free service. 1-800-272-3900. I also wonder if an in person support group would be good for you. The Alz Assoc can also help find those. I found them very useful at certain times of caregiving. The other folks there were kind and understood what I was going through and I got some good ideas and( and had a couple good cries......)

I know you have had a hard time finding a good elder law attorney but I think that needs to be your focus. Maybe expand outside the city if you have to. The attorney can help navigate these decisions and the financial planning for your parents' long term care.

As for what help to look for, I think you need to make a plan for short term and long term. Do you want to care for her at home and hire help or are you going to look at getting her into a memory care facility for the long run? Have you looked into adult daycare? My family found it very helpful when we were at a phase of having to make decisions and not having the time to do so. It got mom out of the house and doing activities she could manage, and we had time to take care of life. It bought us a couple years actually of surviving with mom at home before we had to move her to MC.

I remember this phase. I cried all the time. I totally get what you mean about losing your past and future when your parents slip away and also the immense pain at what your loved one is losing, all the potential and dreams. Let yourself grieve. There is so much to grieve with this. It's normal and painful but at least in my experience it does get better. Everything seems dark right now but keep moving forward, there is light somewhere at the end of the tunnel. This is a terrible, life changing journey and I am sorry you have to be on it.

Brooklyn74

Hi everyone, thank you for your support. It's nice being able to just vent and be sad here. I'm trying to piece together a long-term care plan, but it's only me, and there is so much to do in the present, I can't get everything done. I found literally the only GCM in my mother's neighborhood. $300/hr plus travel- ugh. Using her money for this makes me cringe. The women was emailing me but I haven't heard from her since Friday morning. I was hoping to have a home eval when i brought my mom home, but that doesn't appear likely. So I'll have to keep going back and forth to her house. Without traffic, it's "ok" about 2-3 hours. with traffic, it's hell.

I looked at one assisted living place near me. looks amazing... all we need is like $12,000 a month. rooms go up to $25,000 a month...WTF. Who has that kind of money? We looked at an apartment yesterday for the two of us, it was too small. Perhaps she'd be better off close by me, in her own place for now, with an aide checking in, and me around the corner. I wish my place was big enough that she could just crash with me for a while.

I will call the ALZ hotline today. I have before. I need help with medicine. I want her to start taking her Galantamine, but I'm nervous bc I don't know if she'll take it, take too much or not at all. And I don't know what that does to the meds and her. It also makes me sad having her at home taking it alone, I want to be there if she doesn't feel well.

Part of me wants to bring her home for her PET scan and then bring her back home w me, but she's happier in her own space and I have so much to do, which I never do when she's visiting bc my apt is so small. Does anyone know anything about adult day care, that isn't really adult day care? does that make sense?

MN Chickadee

Adult Day Care is usually a center much like kid's daycare, though they often call it something else such as "Adult Day Services". Ours was part of a larger continuing care complex that had memory care, AL etc on the campus. Some are just stand alone centers. We started mom with a couple half days and worked our way up as she adjusted. We tried calling it "having coffee at the senior center" but mom wasn't really having that. What ended up working is we said she as volunteering there. Though the adjustment was rocky and took a few months she took to it finally and came to think she was working or volunteering and loved going. They had staff trained in dementia care and activities tailored to dementia. She did art, music, had animals and musicians visit, exercise, games, field trips, walks outside and much more. Many accommodate all stages of dementia from early to late. Adult day care is usually much more affordable than full time care and you can arrange it to your schedule. I highly recommend looking into it as an option when you don't know what else to do in order to buy some time and make a proper plan for care.

Brooklyn74

MN Chickadee- how did you find one that you liked? Googling something like that just feels weird. Not sure my mom would go all the time, but maybe for programming which she would like. But dare anyone says Senior and she's out of there.

Iris L.

Don't make it about her needs. You might say that the center is looking for volunteers to help out and requested her assistance. Make her the heroine in this scenario.

Iris