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Is it me?
Polly68
Posted: Tuesday, May 29, 2018 3:33 PM
Joined: 5/24/2018
Posts: 1


Hi all,

I have surfed these pages off and on the last couple years, trying to understand what might be happening with my wife.  But, this is the first time I’ve posted. 

It’s a bit of a long story, but at times, I think maybe I have just done so much research that, I’m scaring myself and she is just fine and at other times...I feel like if I can’t get her to see it and get help, we have a long road ahead.  (She has finally agreed to let me go to her primary physician with her to talk about issues, but keeps changing the appointment time).

Anyway, my wife is 57 and has some pretty significant memory issues.  Maybe if I give you examples, you can tell me what you think??

*She had an issue 3yrs ago where she became severely disoriented and couldn’t move her limbs or speak for 3 hrs.  Stayed overnight in hospital, but it wasn’t tia or anything identifiable.

*Can’t remember conversations, decisions or scheduled events.  Has to put everything in her phone or will forget...can’t even remember my phone number.  I have to remind her before she comes home from work, that we have people over...if I don’t, she can’t handle it...kind of hides.  

*Has a really hard time with unfamiliar environments or change...gets disoriented easily. We went on vacation to Europe and shopped in the same city everyday.  And everyday, the stores were “new”for her...even the people who worked there recognized her, but she didn’t remember spending money there the day before. 

* She decided to go for a walk after work one day.  Had the key fob in her pocket, got out, walked away and “forgot” to lock the car.  EVERYTHING in the car was stolen...including her phone, purse etc, so she had to drive back to work and have them call me...they have my number in case of emergency.

I have other examples, but these are the big ones.  And I have to say, that at times her memory seems almost ok?  It’s like these symptoms seems to come and go...

I don’t really know what to think honestly, any and all advice is welcome.  Thank you in advance.   


Mimi S.
Posted: Tuesday, May 29, 2018 5:41 PM
Joined: 11/29/2011
Posts: 7035


Dear Polly68,

Welcome to our world. I'm so glad you found us.

Do tell us what the process of diagnosis was. Was there a complete physical, numerous blood tests, brain scan and a several hour long neuro-psych?

Being on these boards shows the worst of what may lie in the future. The majority of those diagnosed have a rather peaceful decline. Yes, there are behaviors; the endless questions, possible wandering, etc., but the worst you have read about here are not common.


Heyno
Posted: Friday, June 1, 2018 9:05 AM
Joined: 4/14/2018
Posts: 18


Polly68

Those symptoms must be checked out. I am 50, just beginning to learn to cope. I can't read a novel anymore, when I put it down everything goes with it. The world is different, incredibly difficult for your wife to explain, but it just seems to be "off." The store scenario is very familiar, I am easily rattled. I carry pocket notebooks to write things down. It may take longer to leave home but have a checklist posted if need be..keys, wallet, lock door etc. I don't like hearing welcome to our world, I'm scared, but show your wife you can do this! Hang in there....


Me&Sis
Posted: Monday, June 4, 2018 11:52 AM
Joined: 8/18/2017
Posts: 20


Hi, I hope you don't mind my joining your part of the forum, it seems a little more positive and encouraging than the caregiver section. Mom's not really early onset, at age 69. But I'm 50 and worry this will be me one day soon. So I may be visiting here and speaking for myself.

Mimi S. wrote:

Being on these boards shows the worst of what may lie in the future. The majority of those diagnosed have a rather peaceful decline. Yes, there are behaviors; the endless questions, possible wandering, etc., but the worst you have read about here are not common.

Thank you Mimi for this! I also appreciate Polly68, because I am feeling frustrated with my Mom in I am sure the early stages, and I know that all of the things that bug me can be managed with patience and love, and there are strategies that will help. It was just nice to know that, or to hope that as you said, there can be hope for a peaceful decline.  

It seems that the worst we read about here, is also because many of the frustrations shared or concerns are from families in the later stages. Like your experience Polly, sometimes Mom's memory problems seem more pronounced and significant but there are other times they are hardly noticed (she has always repeated stories, she doesn't like a silent room).

Some things I've learned... and I'm sure there will be way more learning to come!

I don't ever tell Mom maybe. If the plan is possible, I don't tell her until it's confirmed. Otherwise she writes it on her calendar and is disappointed when that grandchild doesn't turn up for a visit, or the friend didn't come over for wine and snacks on the patio.

Mom just wants to be valued, as does everyone. So, I have to give her chores that don't require my attention (otherwise, she gets frustrated with my help). When it's time to do dishes, I'll get out the laundry basket of baby clothes (my newborn grandson lives with me) for folding (she can't manage to load the dishwasher in a way that makes sense and things fit but wants to help, but admiring each baby sleeper creates as much joy for her as rocking the actual baby).  

When running errands, I need to give her the checklist and leave her to be in charge of it. Otherwise she will change the plan and forget what we were set out to do. Then I don't have to keep saying, "no Mom, we already got the __". She doesn't want to be constantly corrected, and I don't want to treat her like a child.

Polly68, the first step is as you said, to see a doctor. Mom was angry with me at first, but I said to her "you are so good at taking care of all your other health needs, and following through with check ups, you might as well ask about memory just to check".  Next step, just take it one day at a time. Breathe, enjoy the moment, be thankful for today.


Iris L.
Posted: Monday, June 4, 2018 12:40 PM
Joined: 12/15/2011
Posts: 16187


Me&Sis wrote:

 When it's time to do dishes, I'll get out the laundry basket of baby clothes (my newborn grandson lives with me) for folding (she can't manage to load the dishwasher in a way that makes sense and things fit but wants to help, but admiring each baby sleeper creates as much joy for her as rocking the actual baby).  

Me&Sis, this is a failure-free activity, which is great for your mom.  There is a book called something like "Failure-Free Activities for People with Alzheimer's Disease" with a lot of suggestions.  I read it years ago, and I don't know if it is still in print.

 

PWDs cannot tolerate stress or too much commotion.  Most modern households, full of children, 

grandchildren and pet, are too busy for PWDs.  They cannot keep up, and anxiety and chaos ensue. 

Family members become upset because Grandma has "behaviors".  PWDs do better with routine and 

with less stress and uncertainty in their lives. 



Iris L.
Posted: Monday, June 4, 2018 12:44 PM
Joined: 12/15/2011
Posts: 16187


I had trouble with formatting the above post.  Is anyone else having trouble with formatting?  I tried to bold my post, but the posting became duplicated.  This post does not seem to have the same issues.  I'll see if it happens again.

Iris L.


llee08032
Posted: Tuesday, June 5, 2018 7:08 AM
Joined: 5/20/2014
Posts: 4406


Iris,

I've had trouble formatting a quote post.


alz+
Posted: Wednesday, June 6, 2018 1:38 AM
Joined: 9/12/2013
Posts: 3549


yes on formatting problems and changes in size of box etc

this week in making things easier for me I had my hair cut off. I look like Mike Pence. No, really, having hair became too much to handle.

My wardrobe is still in flux but I have 80% pull on clothing, knit dresses that go over my head. No buttons, zippers, no shoes that tie. elastic waist pants.

I have slowed down another notch. Got new glasses on eBay with a coupon! and sent them to a company for lenses. They are large pale blue frames with gaudy sparkling crystals in corners. 

my responsibilities are very low, my joints are unhappy, my back is complaining and we are living like we are on vacation. Keeper (husband) got his appetite back with the B12 correction and is cooking like he hasn't in years.

for muscle spasms hospice nurse said "eat a banana"and it helped. Also eating fruit and salad and liking it.

will check in again on weekend. 

In response to people caring for someone, a private place, a calm dog, a walk in fresh air, all were very beneficial to me. Dementia is strange and I think I passed thru the hard stages and am now just pretending I am on vacation. 

I taught myself to read again and I can follow more or less but my eyes get very tired so I went to audio books. To have no energy and lie in bed on clean sheets with the window open and listen to a skilled narrator read a novel or a book on politics is very relaxing.

blessings on all who strive to make their loved one feel safe through this illness. I am definitely going to have more problems with bone pain and the trouble that comes from not being able to walk enough than with silence. I have seen suffering, this is not so bad right now for us. We laugh a lot and started cuddling again.

stay open to wonderful


Iris L.
Posted: Wednesday, June 6, 2018 1:52 PM
Joined: 12/15/2011
Posts: 16187


alz+ wrote:

 my joints are unhappy, my back is complaining 


What helped me a great deal for back and joint pain was to float in a warm water pool.  I did not swim, just floated on my back.  The relief from gravity reduced pressure on my back and joints.  I did this 2-3 times a week.  Are you still going to the pool?

Iris L.

Haven
Posted: Friday, June 8, 2018 2:55 PM
Joined: 11/2/2017
Posts: 41


I can totally relate.My husband was 57 and working when a fall at work caused a diagnosis of post concussive syndrome.A year later a diagnosis of dementia.You name it he has been tested.He was prescribed Galantamine and Mothers Day we had to call an ambulance for his seizures.The doctor at the hospital said he fainted. THIS WAS A SEIZURE! I have seen both.I called his neuro who referred us to a Gerontologist(even though he is 59.In3 days he had an MRI and met with her,Two days later. I got a phone call."Get him off the Galantamine! It is causing seizures and his heart rate to drop. She had reviewed hospital records to find his heart rate was dangerously low! First doctor to ever do anything worthwhile.She says he has a frontal lobe dementia and Galantamine won't help but she is willing to experiment.CBD oil will be prescribed soon.Legal in Canada in  weeks.She wants to try anything that works.Finally!!!