My mom was recently diagnosed with Alzheimer’s. Still waiting on results of CT scan. The neurologist was very gentle...saying the word dementia, but quietly....out of the side of her mouth she said to my sister “Alzheimer’s”. Ugh. She is on the highest dose of brain meds and the neuro said there is nothing else to be done. I’m guessing there will at least be a follow up appt with info on the CT scan.
My mom knows what’s going on and she’s severely depressed and frustrated and angry. Things have been changing for the last couple of years and it’s just getting to where she can’t handle her own meds or money or even hygiene (though this might be more due to depression).
I know we need to get legal paperwork in order. Is there a list of paperwork we should have?
Also, now what? I mean...do most people have a social worker or someone who hooks them up with services? I don’t even know what services she would need? She’s 80. Is geriatric doctor better for her than a general practitioner?
It was interesting to see that on my mom’s report from the doctor visit that it didn’t mention dementia/Alzheimer’s as an on-going condition, but simply mentioned patient care. Is that done so the patient doesn’t get upset if they see it? I’m just hoping a doctor knows what’s going on if they see her urgent care etc (she doesn’t usually like us going in the room with her).
Anyway...needing a little direction here. Thanks!
Is she married or widowed to someone who served in the armed forces? Look to a VA attorney to help with that if she is.
Are her resources really low? If so she may qualify for Medicaid. An elder law attorney will help you with that. (They're worth every penny btw. Both VA & elder law: I know cuz I used both for my Mom and....they worked!)
Have a sit down with your Mom and ask her what she wants when it comes to emergency or end of life care. Would she want emergency services to save her or just let her go? If she's like my Mom, she may want a DNR (Do Not Resuscitate) on file for her. Geriatric care can be given by a PCP, nursing homes are known for that type of care as well. It just depends on what your Mom may need. Hope this long response helps you. Oh, almost forgot, if neither you or any of your siblings are on your Mom's bank accounts, please get that done asap-your Mom has to be present to add someone otherwise the bank won't do it. Whoever becomes her POA will have to be responsible for that from now on. God speed my dear.
Meds for ALZ/Dementia are only really good in the early stage. They just slow down the process not cure it. Eventually, they don't work. The brain is dying.
wishing you all the best 💕
It is a blessing that your moms doctor didn't put that diagnosis on her paperwork, that way you can honestly say she has no official diagnosis and therefore you can get all of the paperwork in order.
Please get this done as soon as possible, you don't want to have something happen and not have any authority but all of the responsibility.
I am so sorry that your family has to make this particular journey. Remember, it is a marathon, not a sprint. Don't let it or her consume your lives completely, get help and, breathe. Unfortunately, it tends to be a long rollercoaster ride, but you will get through it.
Hugs to all of you.
ps: yes, a geriatric doctor would be better then her pcp.
Yes, will look I to a geriatric doctor ASAP.
Wekcome.keep reading. Best to you.
Our local Alzheimer’s organization called my sis today. I guess the neurologist gave them her number. It just keeps getting more real.
My sis and I are discussions business and getting paperwork in order in the next week or so.
As of right now...I’m literally weak with....can’t even put words to it. I am just physically drained. My arms are heavy...everything is. Strangest thing ever.
Thank you, again.
What paperwork needs to be done that would be affected if she did have a diagnosis on paper from the doc?
”It is a blessing that your moms doctor didn't put that diagnosis on her paperwork, that way you can honestly say she has no official diagnosis and therefore you can get all of the paperwork in order.”
May God be with you and your family!
My wife, now 82, has had Alzheimer's for the past nine years, but she is still at home with me and doing remarkably well. Take a look at C. S. Lewis's book, "The Four Loves" which are friendship, affection, charity and Eros (the state of being in love with someone, with or without a sexual side). With any form of dementia, you have to go slowly. So it's easy to remember FACEs--friendship, affection,
charity, Eros, slowly.
You will need to deal with the depression. It sounds like your doctor knew what he was doing when he did not write up the Alzheimer's. It would have made things more difficult if he had.
Don't try to do everything on your own, or even just within the family. Get caregivers/ companions in so you can still live a life of your own, even as you love and care for your mother.
I know that it is easy to move into denial and feel that this can't be happening to me. However, the way ahead is to face the challenge. You can do it! Prayers and hope for the future.
Im not alone, but will be a caregiver for my sister for a while, as she’s I’ll as well and getting surgery soon. This is all pretty unbelievable. Grateful for my husband and sweet kids.
A P.S. to my post. Take a look at this from Wendy Mitchell who has Early Onset
Alzheimer's. It's very positive and might encourage you:
https://whichmeamitoday.wordpress.com/2019/03/26/letter-from-emma-thompson/
Also, Wendy has written a lovely book, "Somebody I used to know."
It is worth remembering that with the age at which your mother started having dementia, it was NOT early onset. That means there is no genetic base that suggests that you or anyone in your family will be more likely to get dementia.
You can cope. Just try and pray and seek help from friends.
All the best
This is a process, so you don't have to know everything now; but you have to start thinking about next steps. One thing is that she will need to get used to having you in the exam room with doctors. You will need to hear what is said; she won't remember, might not understand what doctor is saying and might try to hide bad news. and make sure all doctors you go to have her signed permission and agreement to share information. You just do that by a signature on a form when she has her next doctor appt.
I would really encourage you to talk to your mom about allowing you to go with her to any appointment (doctor, finance, etc.) She can't do it alone. I know someone who went in to the doctors with her husband and sat behind him and when the doctor asked her husband questions and he didn't answer them correctly she would nod/shake her head and the husband never saw her but the doctor did. If she has a medical log-in try to get that also or set it up for her and then you can use it to email her doctor (once you have the POA, etc.) questions and concerns.
If her house bills are paid electronically I would get all passwords, if they're not I would talk about getting that done so someone can keep up on paying them. Look into a ALZ Day Program for you mom. Make sure they have different activities, not just sitting and watching tv (that happened to us). It might take a while for her to get used to it but once they do they usually enjoy it. If she resists you can tell her she's volunteering (most places with go along with that ploy), go with her a few times then slowly leave.
Telling "lies" to keep you mom safe is okay. I know a majority of us grew up being told don't lie but it's all about keeping mom safe and happy. She'll never know you're lying and it's totally for her benefit. No one will think less of you.
When my mom started to wander, we put a security screen on the front door with a lock that needs a key to open from the inside and outside. We kept the key hidden nearby. Some won't agree with that but it kept my mom safe.
Some sites say put a black floor mat in front of doors. Their depth perception is off and it looks like a hole so they stay away and some put posters on the door to distract. We also put a lock on the bottom of the back sliding door, it blended in with the color of the door frame so she didn't see it. I also bought a floor alarm mat (with beveled edges, less of a tripping hazard) to put next to her bed. When she stepped on it in the middle of the night an alarm sounded in my room, not her room, and I knew that she was up. It was a life saver -- I would wake up at all times during the night to look at the baby camera to see if she was up.
Go to Goodwill and thrift stores to look for walkers/bath chairs etc. Saves a lot of money. In my situation it's like caring for a toddler and my mom is 77. Enjoy your time with her, make more memories. They can be a real kick sometimes and just make you smile with their silliness. There are hard times also but we try to remember the good. God Bless You and your family. If you pray, then keep praying. You're never alone.
I work from home mostly, so I’ll be able to do most of the caregiving. However, at 50 I’m still selfish and impatient. Time to grow up i guess. Joking, not joking.
If you are going the medicaid route get that started NOW as well.
I would suggest your doctor WRITE down his dx, that is sort of shady that he did not. I am all for NOT hiding anything, you tell them. And you explain it is a disease that can be managed (little white lie there) like diabetes etc.
And you can keep her spirits up by making memory scrapbooks, etc. Think the movie-The Notebook, then do your own variation of it. It will help, can bring out GOOD and forgotten memories and its something you two can do together. It's a loooong road, dementia.
Yes, we plan to print off the paperwork. She has no property or loads of money anywhere. Should be easy to manage.
She does seem to wnjoy looking at old family photos..though the conversation somehow always turns sour as she remembers how she was wronged in one way or another.
As to your mom .... think about how your would feel if your worst fears were confirmed by a dr.? - would you like this plopped into your lap? - if she is subject to some depression then it stands to reason this will make it worse
Do yourself & her a big favour & educate yourself so that you can help & understand what is happening to her - every person is different - go online to 'TEEPA'S GEMS' - Teepa Snow has many short [4 to 8 minute long] videos - there are 13 alone on how to visit a person with dementia [if they are seated come in low on their dominate hand side ... & there are many more]
Good luck from all of us who 'HAVE BEEN THERE TOO' - YOU ARE NOT ALONE so keep coming here when you can to widen your horizons
Yes, checking out teepa for sure.
woltwy random not long before she was diagnosed. Igh
Go in the room with her,,, I made my mom's doctor appointment and mine at the same time since we had the same doctor... It made sense to me, I can keep an eye on mom, and get both things done...
Your mom is mostly afraid of losing control; they all are afraid. I will be too, ...It's hard to give up the reins...
Talk with mom and tell her it's time to let kids help her,
Circle of life.
Mom took care of me, and then I took care of mom. She did a better job, Thank You Mom :) Nobody died on her watch. I miss her dearly.
My my mom says she never wants to be a burden and she definitely isn’t one. It is an honor to watch her grow old.
LIVING TRUST
POWER OF ATTORNEY FOR HEALTH AND FINANCES
Take her to her tax accountant if she has one, and financial advisors now if she will let you. Maybe she won't she is scared...
When the time is right my child will be joint account on everything.
whatever will be will be..
I was diagnosed with Dementia/Prob Early Onset ALZ three years ago one month before my 57th birthday. My DW and I had begun meeting with an Estate Attorney one month before I was diagnosed with results of MRI and Neuropsych exam.I . We put all of our property in a Living Trust for my DW. We also prepared Medical Directives, Power of Attorney's, and Pour Over Wills. We then had an Elder Law Attorney, review the work of the Estate Attorney, who said everything was done perfectly according to the laws of our state, VA. I have been an advid reader my whole life and I couldn't make it through one page of a book without falling asleep or I lost interest.
I was in an absolute fog when I was diagnosed and put on Donepezil and my Neuro told me it could be 3-6mos before I really noticed a difference, and it really was closer to 6mos. I am happy we set up our legal work and my DW will not have to worry about any of the legal stuff and i gave up all interest in our property and money. My sole interest was for our legal affairs to be settled and that my DW would have the property in her name and not have to worry about Probate, making medical decisions for me, we spelled it all out in our Medical Directives, DPOA, so my DW can make all the decisions for me. I do what I can for our family, though I am less and less able. Please take as much of the load off of your mother as you can, it will in the long run, make life simpler for you.
Thank you for your kind reply. I am a pretty happy guy. We were able to get things in order immediately while still competent enough to share. My hope is that others reading my thoughts will be inspired to set up the arrangements they'd like to have in the future for themselves, because there would be no speculation as to what your true desire was.
According to Social Security, a diagnosis of ALZ, or other dementia will put the patient in the category of Terminally Ill and not competent to manage your own affairs. They also consider the patient permanently disabled. My SSI went through with the help of a lawyer that Specialized in SSI Disability cases. I had my first check 52 days after the application was submitted. It cost me a couple of thousand dollars, but it was worth every penny. I will include you and your mother in my prayers. God Bless you both. John
Quick question...she doesn’t own a home and her car is paid off...she only owes on credit cards. We were told by a friend who was an attorney that we could easily run off the appropriate POA forms, get them notarized and that should be ok. It’s just my sister and I , so there shouldn’t be any other issues. What do you all think?
Side note: I did discover in the doctor’s notes (not on the main page) a written diagnosis of Alzheimer’s. Will that change anything?
Can any notary approve the paperwork we run offf from online?