First time caller

Alone Alan

My wife (60) has been struggling remembering things that happened yesterday or even an hour ago. I thought it was stress related because we had major events in our lives: retirement, moving across country, empty nest, new grandchildren. But that was just the start. We tried playing games like pickleball, cards, dice - most with very simple rules - but she doesn't comprehend the rules. Sometimes she would have difficulty getting dressed.

So we went to her GP, who ordered a brain MRI. I don't remember the exact terms but white matter and dying cells seem to come to mind. The GP referred my wife to a neurologist. However, we need to wait over half a year to see him. I called for others and might be able to get the waiting time down to 4 months.

Being the troubleshooting engineer that I am, I did some Google research. I am fairly convinced that she has early onset dementia. My mind is a runaway train on the tracks of depression and anxiety. I hate seeing her cry about not being able to perform very simple tasks. I wish we knew - Parkinson, Huntington, Dementia, Tumor, Cancer.

Just total despair. Thanks for letting me vent.

LearningCurve

Good evening OP. Welcome and keep coming back. There are some wonderful ppl here with great wisdom, knowledge and experience! I will say that back in the late 90's I worked in a Neurology Clinic and even back then new patients had to wait 3 or more months for an appointment. Such a huge demand, and Neuro Dr.'s were and still are few and far between. Stick with these fine folks here and you will be glad you did. Take care!

Jgirl57

Welcome, it is frustrating waiting for appointments , but it is good you have started your research . If you haven’t already completed legal documents , an Elder Law attorney would be able to help you. Now is the time to simplify life for you both while still enjoying your family and any travel you might want to do. Trips may be shorter and planning will be left up to you. We no longer travel but I am grateful for the shorter, more frequent trips we took early on. So sorry you had to find our group, but you will be glad you did.

trottingalong

read the 36 hour day and Tam Cummings assessment tool. https://www.tamcummings.com/tools
She sounds like stage 4/5 of dementia. You can request the written report and diagnosis of the MRI. You would have been notified if it was cancer or a tumor. If it was Parkinson’s there are early physical signs. I’m sorry you and your wife are going through this. Your GP can prescribe medication to help your wife. Anti depressants helped my husband.

SDianeL

welcome. Sorry about your wife. We know how you feel. Wait time for getting an appt with a Neurologist is common due to doctor shortages. You might look for a clinic at a teaching hospital although that might not help the wait. If the MRI showed white matter disease that usually means dementia. During the wait for my husband’s Neurology appt, I used the time to learn all I could about dementia. There is a cognitive test administered by a Neuropsychologist that the VA gave my husband. It’s 3-4 hours long. After that test they told me he had visuospatial difficulties and should no longer be driving. Although that info was important I don’t think I would have put him through that if I had it to do over again. First get your legal affairs in order. DPOA, Medical POA, wills. Tell her it’s because you’re both getting older. Avoid talking about dementia if you can. Read the book “The 36 Hour Day” which was recommended by a nurse. Search online for dementia caregiving videos by Tam Cummings or Teepa Snow. Maybe try to find things to do that don’t involve rules. To calm her anxiety, reassure your wife that you will be there for her. Come here often for info and support. We understand.

Michele P

https://alzconnected.org/discussion/74838/first-time-caller

Welcome. I am sorry you are here with us. If you are near a Mayo Clinic, ask about The HABIT Program. It is an exceptional program that helps people with cognitive impairment, dementia, and their caregivers. I would start getting your legal affairs in order by contacting an Elder Law Attorney. Once you have these documents, give a copy of the POA and medical directives to her primary care physician. Get HIPPA release forms signed by your wife to give you full access to her doctors.
Get all accounts, account numbers, log in and passwords on all of her accounts along with the same for computer and phone. Put TILE trackers on keys, phone, wallet. With the Life360 app, you can track these items and the person. Talk to her pcp and ask if there are any other tests that he or she can order. There is a blood test for Alzheimer’s. Ask for that test. You need a PET scan along with the MRI she already had to get a diagnosis. If you look at posts on this site, you will see threads for what to do when someone is diagnosed. I wish you all the best.

harshedbuzz

@Alone Alan

Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

The unknowns associated with the various dementias are hard for all of us but most especially for those who are planners and/or fixers at our cores. Spoiler Alert: The anxiety and helplessness you may be feeling now may not improve with a firm diagnosis as there will still be unknowns around things like future changes and rate of progression.

The waiting is hard. I live in a medically well-served area and getting mom in to be seen at the memory clinic means at least a year-long wait. You've started the process by seeing your PCP for the MRI and (I assume) blood tests for conditions that mimic dementia but may be treatable (things like vitamin or hormone deficiencies and even Lyme Disease) but may be treatable and to a degree reversable.

White matter hyperintensities are generally related to cardiovascular health; risk factors are diabetes, high cholesterol, HBP, small vessel disease and aging. It can be what is seen with vascular dementia. A brain tumor cancer or benign would likely be seen by an MRI). Parkinson's generally presents with physical/mobility changes well before memory is impacted to the degree you mention. Huntington's is very unlikely unless there is a known family history of it (specifically a parent).

While waiting to be seen, you may want to get your legal affairs in order with a elder law attorney even if you previously did this. At the very least, you'll need a new person to serve as your POA and advocate (this is best done behind a spouse's back to avoid upsetting them) as well discussing Medicaid planning in your new state as guidelines vary considerably.

One point to consider is whether where you moved to is where you want to be during an illness like dementia. When my parents retired, they moved south near the beach & golf and then started to split the year between that and Florida. By the time they added FL to the mix, dad was showing the earliest symptoms of dementia (for him personality changes, a loss of empathy/social filter and the ability to learn new things). This cost them their social life in their golf community but was somewhat better tolerated initially by their social group in FL. That said, they didn't have close friends and were 1000 miles from nearest family which became dangerous when mom became ill and dad was unable to be her advocate. She nearly died because of it. After dad's late diagnosis, we moved them back to my area to keep them both safe and supported.

HB

H1235

Welcome. You have been given great advice. See a lawyer and learn all you can about dementia. One of the hardest things to get used to is that you can’t reason with a person with dementia. This creates a need to agree with things that make no sense( as long as it’s not harmful), change the subject, do things without discussing it with them, and sometimes a therapeutic fib is necessary. I will attach a few resources that may be helpful. It may be a difficult read, but in my opinion better then the shock of an unexpected, unknown symptom. There is so much more to dementia than memory loss. I’m glad you found us.

DBAT.pdf

Anosognosia and Dementia - AgingCare.com.pdf

understanding-the-dementia-experience.pdf

https://www.rightathome.net/nassau-suffolk/blog/therapeutic-fibbing-and-dementia-patients

Alone Alan

Thank you everyone! This truly is a great group! I have my work set before me. I have one more question, if I may. Does dementia have stages of acceptance like that of Death and Dying? If so, I think I may be still in the denial stage. Is there hope that I get to the acceptance stage?

jgreen

Dear @Alone Alan,

The DBAT document is a pretty detailed description of the dementia stages.

Grief also has stages, and as you said, denial is one of those stages. What I’ve read is that each person experiences those different stages differently. And it is not all linear - sometimes we go up and down. I vacillate between anger, depression and pain/guilt most days.

On occasion I have some calmness and maybe even in a bit of control - but not often. Acquiescence seems to be where I am headed for now - just that feeling that things are going to be this way for a long while and that the future for my DH is not something I am looking forward to. Sorry this is so depressing, but that is why this awful disease is called ‘the long goodbye’.

Hugs and prayers to you.

trottingalong

https://alzconnected.org/discussion/comment/261125#Comment_261125

It took me quite awhile to accept. I would vacillate between maybe he does, and I’m sure he doesn’t have it. My husband would have periods of confusion and then days of absolute clarity. We both would question if he had it. Now it’s quite obvious, the confusion is constant as is the short term memory loss. Acceptance on my part snuck up on me. Stages also blur from one to the other, often overlapping into the next stage. I wish you the best. Keep coming back.

H1235

CGK_2303_02_Caregiver-Mindset-OneSheeter.pdf

This was shared by another member but I saved it because I found it so helpful.