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Seeking Advice - Direction
BigBob
Posted: Friday, January 27, 2012 5:56 PM
Joined: 1/27/2012
Posts: 4


Hello all,

 

I will just start right off the bat with a little family history. My grandmother (my mom's mother) had Alzheimer's and was officially diagnosed. She has passed. Also, within the last few years my grandmothers sister was diagnosed with Alzheimers. She is currently alive and functioning with the disease. Both My Grandma and her sister were diagnosed on their 80's.

 

About 6 years ago, I begun to see alarming signs in my mother. I used to live 15 minutes away. One day while she was driving to my house, she called me and asked me what my cross streets were again. She had been to the house numerous times and was very familiar with the area.

 

When I expressed concern, she had a million excuses. Then there were some memory issues - things she couldn't remember, recent things we had done that she couldn't remember and even some long term memories she couldn't.

 

This all happened at a bad time as I was moving out of state so although I still spoke with her every week, I couldn't physically see or be around her except for a few times a year.

 

In that time she had an episode where she just went blank. I flew her to stay with me for a few weeks. We were in mid discussion one day and she just seemed to get lost and suddenly revert to being child like. This happened about 4 years ago. Mid conversation she stopped what she was saying - kind of started stammering on a word saying "Oh Oh Oh OH Oh" in a child like tone, then went unresponsive for a good 45 seconds. Giving her a few minutes to gather herself I asked what had just happened- she didn't know, or remember the event.

 

I pleaded with my mom to go to the Dr. I told her go to the Dr... tell them about the events that happened while with your son in the last few years and tell them about the familiy history of ALZ. She agreed. She says she got checked out and the doc said she was okay - said it was possibly her thyroid, fatigue a bunch of other factors. My sister supported this conclusion. I never bought in completely, but really felt helpless in the matter.

 

I since moved back with 40 minutes of my mom. I see her every week now. For the last year and half or so - I hadn't noticed anything major or seen any episodes. Then recently in the last two months there have been a few similar incidents.

 

One day mid conversation she stops and just starts repeating "That's Nice" over and over and went unresponsive for a brief period of time. She did not recall the event - or rather her account was different.

 

Another time she was doing dishes at my house and asked where the glasses go. I told her then she all of a sudden went into a child like voice and said "I don't know what to do, I don't know what to do - what are we gonna do about this glass"?

 

She also has been having issues at work. They said she is having memory problems and is a safety risk. They wanted her to do a mental evaluation and health exam - she refused and retired last week.

 

My mother has also recently relied on me for stuff in the past that she never would have, wanting me to make calls for her on senior living homes. I found a place near me, but damn near had to fill out the app myself.

 

I am convinced this is Alzheimers given the family history. My mom is in denial and doesn't want to confront the issue. My sister is trying to help, but at this point she is kind of removed - my mom has been relying on me to plan for her future, but I am thinking that is going to have to include assisted living pretty soon.

 

I really want her to live with me - but that's another issue in itself as I have my own issues at home. For starers we are all out of rooms, but the main issue is that I have a young child with Autism who gets intesive therapy and my moms presence would be too disruptive on many levels. Especially because her personality in the last few years has become kind of intrusive and not knowing boundaries. 

 

Me not being able to take care of her, breaks my heart. I have problems galore and am doing my best. I went down to SS with my mom and got her to sign up for SS. She is on the waiting list to get in the senior living home (less than a year) and I am now weighing options and doing research.

 

My first dilema is that she needs to get diagnosed and making her do it - I realize I will need to go with her - but is that the right thing to do? Will she benefit from a diagnoses? Are there additional government benefits to being diagnosed?

 

What will the state, federal and or anything else pay for as far as assissed living?

 

Do I force my mom to go to the doc? Does it matter? Do the medications prolong quality of life?

 

Any help, thoughts and advice would be greatly appreciated.

 

 

 

 


Angela65
Posted: Friday, January 27, 2012 6:25 PM
Joined: 12/20/2011
Posts: 276


Gotta get her Dr. to give diagnosis sounds like your in a heck of a mess i dont know of any government assistance other then medicaid n medicare this is a RICH  persons disease or a poor persons disease SORRY to say if you fall in middle class your pretty well screwed.
FloriKat
Posted: Friday, January 27, 2012 6:41 PM
Joined: 12/20/2011
Posts: 78


I'd recommend taking her to a neurologist specializing in geriatric dementia.  God bless you for helping your mom in this difficult time.  Planning is important and getting legal documents in place as soon as possible will help on down the road.
JAB
Posted: Friday, January 27, 2012 6:41 PM
Joined: 11/30/2011
Posts: 740


Hi, BigBob, welcome to the forum.

 

Having relatives with late-onset AD increases the risk of developing AD yourself a little bit, but not much.  Her relatives were at an age when nearly half of the general populace is at risk for developing AD.  So that doesn't mean much.

There are all sorts of things that can cause dementia symptoms, many of which are readily treatable.  And thyroid problems is one of them!  So yes, it's very important to get her properly diagnosed. 

 

The diagnostic process is basically one of ruling out everything else that could cause the symptoms.  Typical tests for diagnosing AD:
http://www.alzcompend.info/?p=127

 

You probably aren't going to get anywhere fast by telling her you want her to see a doctor because you suspect AD.  Tell her something simple that you think would be more acceptable to her, such as "Mom, the doctors say it's time to have your thyroid checked again."

The "blank" episodes you describe do not sound like any of the Alzheimer's I've seen.  It sounds more like seizure activity.

No, the meds do not prolong life.  What they can do, however, is help the loved one function much better and have a better quality of life.  They can also delay or prevent the onset of serious behavioral problems.  See:
http://www.alzcompend.info/?p=244 


BigBob
Posted: Friday, January 27, 2012 6:42 PM
Joined: 1/27/2012
Posts: 4


Great - Just what I need. Things are already tight with the additional therapies for my son.

 

No government assistance, huh? The irony.....


BigBob
Posted: Friday, January 27, 2012 6:48 PM
Joined: 1/27/2012
Posts: 4


I didn't know that - thank you. I thought the thyroid thing was mor eof an excuse. Good to know it's a possibility. How soon does medicare kick in? That is why she doesn't want to go to the Dr. She is afraid of the expense seeing as she just retired.
BigBob
Posted: Friday, January 27, 2012 6:52 PM
Joined: 1/27/2012
Posts: 4


Thank you all for your input and advice. Appreciated.

 

 


JAB
Posted: Friday, January 27, 2012 6:56 PM
Joined: 11/30/2011
Posts: 740


Medicare eligibility and enrollment:

http://www.medicare.gov/MedicareEligibility/home.asp
Gidget P
Posted: Friday, January 27, 2012 7:00 PM
Joined: 12/15/2011
Posts: 62


I agree that the episodes you describe do not sound like typical AD.  She needs a thorough multi-disciplinary diagnostic assessment.  Look for a memory clinic in your general area, or else a neurologist, neuropsychologist who specializes in memory disorders or at the very least sees a large number of dementia patients as part of their practice.

 

Once you have a diagnosis you will have a better idea of what her current and future care needs are likely to be.  Check with your local Agency on Aging to see if there are any programs in your area she may qualify for.

 

I also agree that having her move in with you is not going to be a practical solution.  That does not mean you will not be taking care of her.  You can oversee her care regardless of her living arrangements.  Ensuring her safety and well-being does not require living in the same household.


Stephanie Z
Posted: Friday, January 27, 2012 7:38 PM
Joined: 12/15/2011
Posts: 4219


Hi Bob,  I don't think you mentioned how old your mom is. Once you get a   diagnosis, you may be able to have her declared disabled. This may help make her eligible for some benefits. If she is not getting social security, she may be able to get it early.

I also agree that this does not sound like typical AD. She may be having seizures or mini strokes both of which are treatable to some extent. She may also have more than one problem going on at the same time. She does need a doctor who can pick it all apart.

     Don't start thinking about all of the problems that could happen. Take one thing at a time. Check with your Area Office on Aging for possible help for her, the Alz. Assoc. National website and your local chapter, and make sure you can get mom's POA so you can help her.

Keep us informed and don't be afraid to ask questions. Someone here almost always has the answer.

Stephanie


amandams
Posted: Friday, January 27, 2012 7:41 PM
Joined: 12/20/2011
Posts: 60


I'll take this question on another way...

 

My mom was terrified of having Alz and it was Dad's opinion that she didn't need to know.  After all, there are no cures.

 

So, 8+ years ao, her dr gave her a referral to see a neurologist (we didn't know about geri-psych and no doctor ever suggested it until recently.  I faxed a letter in advance telling the doctor about mom's fear of the word "Alzheimers" and Dad's wish that she not be told -- if that was the diagnosis.

 

The doctor assured us this was very common.   He told her she had "mild cognitive disorder".  He prescribed Namenda (for ALZ) and she never knew differently. 

 

Every one of her doctors and nurses know not to say "Alz" around her.  

 

About 2 years ago, a nurse went of the reservation and said something like "with your alzheimer's disease...".   She freaked.  Screamed, cried, wished she was dead, absolutely freaked out on me for 2 1/2 solid hours.    Then, once she calmed down and ate some lunch, she forgot the whole episode.

 

Why am I telling you this... you're Mom is likely not in denial as much as she's terrified.  

 

Other than getting her on meds, in my opinion, there is no real reason for her to know.   And if the doctor can tell her the meds are for her heart, blood pressure, or something else, all the better.

 

 


baydey
Posted: Saturday, January 28, 2012 3:33 PM
Joined: 1/21/2012
Posts: 43


Your mother's episodes do not seem AD but I guess it could affect people differently. I think an early diagnosis is helpful because there are meds that can slow the progression. In my mother's case, she was in denial and flat out refused to see a Dr. for years. We finally tricked her into it and got a diagnosis of moderate AD (which has now progressed to moderate/severe) but I'm not sure of the value in an 'official diagnosis'. It does not make it any better or make it any easier to get appropriate care.

Your mom is lucky to have you. I wish you luck in your journey.

 


Gidget P
Posted: Saturday, January 28, 2012 3:58 PM
Joined: 12/15/2011
Posts: 62


The benefits of getting an accurate diagnosis are many.  I'll note two big ones here:

 

1.  There are a number of nutritional deficiancies and medical conditions that can cause symptoms of dementia.  Proper treatment of these conditions can often stop and even reverse dementia symptoms.  Left undiagnosed and untreated the patient suffers needlessly.

 

2.  Treatment is not universal for all types of dementia.  Drugs that can be beneficial to one type can make another type worse.  Examples:  Cholinesterase inhibitors such as Aricept, used to improve cognition in those with Alzheimer's Disease, can make the behavioral symtoms of Fronto-Temporal Dementia much worse.  Antipsychotics used to control negative behaviors associated with Fronto-Tempral Dementia and sometimes Alzheimer's Disease can be disatrous for those with Lewy-Body Dementia.

 

 

You can not make a good workable plan for how to proceed with plans for future care unless you have a good idea what it is you are dealing with first. 

 

 


Debbie 1951
Posted: Saturday, January 28, 2012 4:05 PM
Joined: 1/1/2012
Posts: 138


I agree. My mom & dad both knew he had it, and she said if it happened to her she would want to be  dead.  She saw him struggling with his memory. She thought she was okay but I  saw her  symptoms years before she was diagnosed officially,and I buried my head. I was dealing with my dad's illness which by the way didn't kill him. ALS (Lou Gehrig's Disease) did. He never really had issues  other than forgetfulness. Well I needed to get her to the Dr. for an official diagnoses but alerted the staff not to use the AD word. Even in Xray I alerted them to say we are just scanning your body. I do not use the word, when a sitter comes I tell her it is for her safety, she has had a few falls. I tell little white lies, just so I don't upset her. She gets upset with herself so often. Her Dr. understands so we have discussions on the phone after he sees her every three months. So it works for us to avoid the nasty word.

God Bless

Debbie 1951