Newly diagnosed AD and living alone
Duh! I realized I had posted before in the incorrect theme? Aarrgghhh. I don't have "early dementia" I am newly diagnosed with AD and I live alone. Phew, but glad I finally realized it and I'm starting this new discussion. I hope there are some Peeps out there who are still "young" in their diagnosis. Here's what I posted in the wrong group:
*****Hi all. May God bless you in through this part of your journey. I am disappointed to report (I was waiting to tell you how the first one went) that I joined and was invited to an online live group which was to be my first one yesterday. A group actually for ME ... the newly diagnosed AD patient!!! I "sat" in an empty virtual room all alone for over 15 minutes, no other "participants" then finally called the 800 number for help. Of course they were "sorry" but needless to say I was disappointed. This was a published event and one that I had to register for (and have a telephone interview). I can only suspect that no one but me knew about it. I was so disappointed. What say you?*****
This is a new discussion thread, not for the caregivers (God bless their hearts) or the family members (God bless their hearts) but for me ... the AD patient/survivor AND you I hope. With His love, Nancy in Florida 😀
Comments
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Welcome Nancy. There used to be an online CHAT feature but it was discontinued after the latest computer system update. What we have now is messaging via the message boards. Please feel free to post your questions and concerns here.
I have a diagnosis of cognitive impairment not otherwise specified, I do not have Alzheimer's Disease.
How are you doing? Are you on any medication? Please continue to post and meet the other members.
Iris
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Hi, Iris. I've been on here quite a while. I just used the wrong group discussion before. Anyway, got brave and started my own. I hope there are more newbies like us that will participate. I, too, have just been Dx all this while as having MCI but just recently, with the "help" of an awful, hateful, new Neurologist ... got the AD words in black and white. I had a lumbar puncture (spinal tap) and guess that's pretty conclusive with the other scans, etc. I believe I might be one of those "Mixed" peeps, as there is a lot of vascular stuff going on with me also.
I've been "off my feed" of late, gained weight, cholesterol up again, etc. and phew I can tell the difference. My Cardiologist wasn't happy with me at my last appointment either. Trying to get back doing what I know I must do but ...
Anyway, fired the mean, bully new Neurologist, and am trying one more (then I give up ... "Uncle" ... I'm in Orlando and it's not the boonies but our pickins are slim in the Neurology area. Being all alone, I just can' opt for Baptist Health Jacksonville or Mayo Clinic Jacksonville, but wish I could.
I've got to go now and get ready for an appointment for a tour of the assisted living/memory care facility I am pretty sure I want to use when the time is right. I went through all the time and effort getting ready for the appointment yesterday ... aarrgghhh ... it was for today. I've had a bad week with my poor brain.
Anyway, I hope we can be friends. May God bless you for your kindness in reaching out to His beloved. Nancy
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Welcome Nancy. I hope you got some news from your appointment today.
I don't understand why you can't go to the Mayo Clinic.
There can be a cardiovascular component to dementia. This is why attending to cardiovascular risk factors can be helpful in dealing with dementia.
Please keep posting. We all need to support each other.
Iris
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I have been diagnosed with VD & ALZ & MCD. Hope I remembered the acronims correctly. I am also in Central FL. I was able to see a Neuropsychologist 6 months after being told I had ALZ.
I have a DH & SIL (I guess my bro too) that are supportive. & 1 Sis on the other side of the continent. The rest of my family have been very hurtful. My mother has been the worst. Due to my LO strong urging, called Mayo. I have an appointment in Jax. That took probably 4 months to get a call back from Mayo. For a 2nd opinion. I've had all the tests Mayo talks about on their website. I can't find fault with my Diagnosis.
EEnough whining from me. I have my happiness back on. I am covered!
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Hey Iris. It was a beautiful Assisted Living and Memory Care facility. The one I truly want to go to eventually, but oh so expensive. I'll have to check out my options.
I can't go to Mayo or Baptist Health as Jacksonville is over 2 hours away. I can't do that anymore.
I'm really well educated and researched on my illnesses (I'm a 4x cancer survivor and have always chosen to be well informed). New (one more time) patient Neurologist appointment soon, I sure hope he's good. I have my AD Dx from my spinal tap, and I know I have cardiovascular problems, so I'll probably in the end be considered Mixed Dementia. I'm working hard on my risk factors and have been for a long time. Thanks, though. I appreciate it.
How are you today? God bless you, Iris.
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You made me cry with joy at your comment. We can whine ... but always thankful when you're happy! If you can't whine here, where can you whine? Where are you if you want to share. I wanted to go to Mayo and/or Baptist Health Jacksonville, but 2+ hours for me from The City Beautiful. I'll have to go look up all your abbreviations as I can't see them from here. It sounds like you have a good Neurologist (although you mention Neuropsychologist (which I only used for testing). God bless you honey. I wish I could here your two dogs sing ... I'm a crazy old cat lady myself.
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I have a stupid question 🙃 Is there any place here to have a private conversation? Here we are, both in Central Florida, but I am uncomfortable with being too honest to everyone about everything. That doesn't sound quite right. I am hurt by my mother. I forwarded a couple of articles to her about 'how to talk to folks with ALZ'. She, in turn, sent a text to my siblings & their spouses stating that I had forbidden everyone from asking me any questions. She can be very passive aggressive. I guess I should find a counselor that I can get advice & guidance from. I need help. I feel good about eating right, exercising, taking my Rx, getting infusions, and fighting back against my Diagnosis. Avoiding stress is a challenge.
Good wishes for Everyone!
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2 dogs, Disclosing to outsiders is a major challenge for PWDs. We believe that our family and friends should want to know about what is happening with us and that they would want to support us. But this is not always the case.
I have found that the best support has come from the members here, both members who are patients and members who are caregivers. We need guidance from people who know what they are talking about and who are trustworthy. I have found that most professionals who claim that they work with older adults don't know what they are talking about and are not good resources for me.
The Alzheimer's Association offers the service of a Care Consultant, who specializes in finding local resources and in family dynamics. I feel confident in referring you to call the Helpline at 1-800-272-3900 and ask to speak with a Care Consultant. One is available 24 hours a day, and there is no charge for this service.
As far as help, exactly what help are you looking for?
Iris
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Thank for the info Iris. I can't remember what I shared....but my mother told family in a group text that I had forbidden anyone to ask me questions. That is not true. She doesn't ask caring questions, hers are "do you remember the Smiths?" I say No. Then she goes on to tell me things that are supposed to help me remember & asks again, Didn't I remember them.... she challenges what she is told. Her memory is perfect & mine can be when I 'get better.' She signed me up to do a Christmas Musical program when I told her I did not want to do it. Why didn't I? What's wrong? You can do it. I've already spoken to these other people to help you get to the meeting. These people are all looking forward to hearing I you play. I don't understand.
She's never been the tender, kind, caring, supportive mother. I can't expect her to change. She's even told me so. 20 or more years ago. She's not even 90. She should live to be close to 100. That's how her family is. A group of leaders, all with the best plan, living a long life.
I'm going to say my prayers & go to sleep & think happy, positive, forgiving thoughts. I will request that you all are blessed.
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2 Dogs, we all have just one life to live. I learned a lot of tips and philosophies from the members to help me live the rest of my life with a failing memory and with some other medical issues. I'm just not going to live the rest of my life being miserable!
Boundaries are important and necessary.
I hope you were able to get a good night's sleep.
Iris
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Good Morning, Iris!
I did sleep well. Now I'm drinking coffee & checking out the news on the laptop. Something might have happened while I was sleeping. That thought makes me laugh. Of course the earth continued on while I was sleeping. Babies have been born and plants are flowering! I see an article that says fermented foods are good for me. Kimchi is listed! That's good news for me. I like kimchi.
Have a wonderful Day!
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A recent memory from Facebook popped up. This goes for me still ...
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Amen and Amen
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I posted as I've had a recent experience with a neurologist who labeled me incorrectly before he even sat down. That's a bit of an exaggeration but I did a lot of research because of it, and of the psychiatrist in the care group for some dementia patients. I even found two Christian therapists using the recommended PsychologyToday.com web site who specialized in Alzheimer's disease. https://www.psychologytoday.com/us?tr=Hdr_Brand
After speaking with one of them, it was her recommendation that maybe for me adding yet another provider to my care team wasn't the right thing for me. She made this recommendation for the wrong reasons, but I decided that for now, I will hold off on that. I have no one to pressure me or whatever so I'm hoping and praying my new (please, Jesus) Neurologist that I have a new patient appointment early Monday AM will be the one to guide me. Did that make sense? I rambled on a bit.
I've got one more thing to share in my research on this subject, but a bit later when I find it again. God bless you all this day. Nancy
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Phew ... what will I do if I can't remember where all my research stuff is stored ... aarrgghhh! Perseverance builds character and character hope. (Romans 5:3-5 NIV)
I hope something I share helps someone sometimes. I'm trusting in the Lord to post the right stuff.
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Every Saturday evening I post one of my photos with Scripture on it. To Him be the glory! I hope this helps someone. God bless you all.
Romans 12:2 NIV Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is—his good, pleasing and perfect will.
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NDY, Neurologists help with diagnosis and memory medications, such as Aricept or Exelon patch and Namenda/memantine. Are you are searching for other guidance?
Iris
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Are you with AA or a dementia peep like us?
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Nancy, I have been a member of this board as a patient with memory loss since 2009. My neurologist gave me a diagnosis of cognitive impairment not otherwise specified. He offered me a trial of Exelon patch and within a few days I noticed improvement in my speech, memory snd overall functioning. A few months later I began Namenda. These medications, along with following Best Practices that I learned from the PWD members here, have been helping me. Several years later, an Amyvid PET scan showed that I do not have Alzheimer's Disease as a cause for my memory loss. My memory loss comes from a combination of medical conditions, including hypertension, systemic lupus, antiphospholipid syndrome, and sleep apnea.
In the beginning there were many patients who posted, and I learned quite a lot from them about living with memory loss. I have learned quite a lot from the caregiver members, also. Although as yet there is no cure for Alzheimer's Disease or the other dementias, there are strategies to take that can improve functioning and help a person have a better life. This is what I am doing for myself. I have learned so much from the members here, that I want to share and help those who are coming after me. There is much confusion but little help or support for the person with memory loss in the outside world.
So, to answer your question, I am a person with memory loss but not dementia, and I am not a member of the Alzheimer's Association.
Iris
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What a story. Bless your heart. Bless your heart for your perseverance.
I have had what I coined "Chemo Brain" from way back in March of 2004, with my Stage IV Cancer Dx and chemo. I've suffered from it for 20 years (my anniversary for cancer is this week. Phew) Short term memory loss, cognitive impairment, etc. and not once with four major cancer battles now on my score card did a doctor ever think to pursue other than chemotherapy mediated cognitive impairment, etc. Everyone all these years seemed pretty sure I'd be dead, as the Stage IV three major secondary cancers following the first one did a number on me and my brain. My maternal grandmother was in a nursing home for 18 years, completely incoherent, yet lived until she was 99 1/2 years old. From what anyone remembers, they called in hardening of the arteries back then.
But now ... well two years ago now ... I knew this was different. My lumbar puncture test recently (to make a long, sad healthcare story short) confirmed Alzheimer's disease, but I think I'm a Mixed Dementia case as I have newly diagnosed CAD and other awful vascular problems. I was doing great yet had a set back in September, and I've never gotten back on my game since. Maybe a couple of days including today I ate really well, so I'm hoping I've had a turning point.
Anyway, now I'm too tired this afternoon so I'll have to close this novel. Did I hear you say, "Thank goodness!" I have my third new patient General Neurologist appointment tomorrow at O dark 30. So for now, please know how much I appreciate you, and will pray for you, Iris. God bless you, honey. Thanks for the great reply to my question. Nancy
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Nancy, I belive vascular issues are underestimated as causes of cognitive impairment. And I believe that "chemo brain" is also underestimated. I'd be interested in what this new neurologist has to say.
Is this avatar a good representation of you? Is it a form avatar or did you compose it yourself? It looks great!
Iris
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Hey honey. Not during my "chemo brain" cancer stuff did vascular issues matter (IMHO). But now?!?!? What a difference I could tell before I had my setback last September. I had brought my cholesterol level WWAAYY down, weight was good again, but then ... so now I've been struggling. But I've had a couple of good days so I'm hopeful. Salt is not for me anymore. I don't think I was an abuser before it mattered, but now, goodness. I can tell these last few days (and my fancy scale confirms), back to no added salt, etc. My legs are half the size, I've been urinating like mad (keeps me up more at night as I'm incontinent), and this morning 7 lbs off the scale and I know pretty much it is from water. I've still got headaches every day which started before CHRISTmas but I think I've made the turn back to taking better care of me.
And yes, I use iPhones, etc. and the Avatar is made by me with their apps. If I could had hundreds of wrinkles on my face and neck, then it's me. I like them.
Thanks, beloved. I'm going to start a new comment for my GOOD NEWS from yesterday. XOXO Nancy
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Well thank You, Jesus, I have good news to share. Went to my third new patient appointment yesterday. He's independent rather than with AdventHealth or Orlando Health (my two main hospital systems). AND IT LOVE HIM! He's kind, gentle, makes lots of eye contact, listens to my complicated history... The only thing is his accent is a little bit tough for me but it makes me really concentrate on what HE'S saying, too, so all in all it's really hopeful. Only 3 miles from my house. Am I blessed or what?!?!? He kept my notebook (one just for my brain) which is disconcerting but appreciated (so he can read up on me without my speaking and interrupting him (which I do even more with memory loss, as I'm afraid if I don't say it fast I'll forget what I wanted to say).
Oh my goodness ... I'm exhausted today but oh so hopeful that he'll stay with me through this final stretch.
God bless you all. XOXOX Nancy
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I think there is a private message feature? I was going to comment on the group to someone specific, but by mistake opened up this new screen HOME . INBOX . NEW MESSAGE. On my PC it's at the top right next to my icon and it's a regular old fashion email/message "envelope" ... and sure enough! I do believe there is value in posting in the regular comment section for all to see and learn from, but just sayin' ... if on occasion privacy is required. God bless you guys. XOXOXO
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OH my goodness, I forgot the best part. Instead of scowling at me and criticizing me, he hugged me! TWICE! Am I blessed or what. XOXO Nancy
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Nancy, you are very fortunate to have found a good doctor.
How did you get your cholesterol down? I am still dealing with this.
Iris
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My heart doctor put me on 2 different cholesterol medications after a mild heart attack in 2009, my cholesterol is normal and no more problems!
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I see.
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Hey, honey. I will reply, honest I will. I've had a hard week and I'm just exhausted and having bad brain days. God bless you, Iris.
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I posted, but don't think you've been on my thread lately. Look at the upper right purple bar, and there is a email envelope icon. I think that will work if you want privacy. God bless you, honey.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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