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Finally got neuro consult...
Wilsontot
Posted: Thursday, January 5, 2012 9:45 PM
Joined: 1/5/2012
Posts: 32


Hey all....I think this is the site I was visiting before (and before we got diagnosis).. My dad was thought to have some dementia but before we could really explore it - we had several road blocks get in our way.  Dad first had a bad reaction to meds - awful side effects and then even worse withdrawal symptoms.  He ended up in hospital with an UTI and ischemic colitis (inflammable intestines which caused bleeding) plus a slew of other stuff.  After a week there he ended up spending almost 8 weeks in a local nursing home rehab.  After about 4 weeks he finally started making some progress with everything and got to the point where he ACED his home assessment and we released to go home after almost 8 weeks.  We got home the Wed before Christmas and he was happy to be there.  However by Christmas day he started having little crying spells and didn't want to eat much.  Some days were good and some days were bad.  From the time we got out of the rehab until the time we had a follow up with his primary care doctor this past Friday - he has lost 5 lbs and I am sure by today (Thursday) he has lost another 2-3lbs.  Anyways - this morning he called me - not sure how he got me - but I think my number is first on the speed dial so assuming that is it - haven't heard of anyone else he called.  He was extremely confused and agitated when I got to his house -my mom had no idea he had called me.  I decided to call 911 after mom told me he had fallen 3 times during the night (he also sort of feel - more like got weak legs and slowly went down) and there was no consoling or calming him down.  He was also hallucinating some.  After getting to ER and have initial tests and CT Scan everything was good - urg - I was so worried they might send us home -but with the extensive confusion he was admitted.  This afternoon the neuro doc came to see him and pretty much confirmed he has Alz Dementia - even though I pretty much knew it - it was hard hearing.  He will be having a MRI of his brain tomorrow and a couple of other tests.  Hopefully now that this has been confirmed we can get on some meds to help level out his confusion.  It's awful to sit and watch your 85 year old father crying and not be able to help him.  Luckily we have some rehab days at the nursing home which will give us more time to get arrange for long term care....I just don't see that he is going to get to go home.

 

I look forward to catching up on some reading on the forum while sitting with my dad tonight at the hospital.

 

Blessings to all!

 

Susan


rose_ro
Posted: Friday, January 6, 2012 12:47 AM
Joined: 12/21/2011
Posts: 2431


is he going to be in long term care?

 

I think it sounds like he did well in one care place, maybe should be back in another?

 

this is one reason I have been like, I DO NOT WANT MY MOM TO COME ''HOME.''

 

What kind of meds bothered him?

 

DId the neuro suggest memory meds?

 

 


Wilsontot
Posted: Friday, January 6, 2012 3:45 AM
Joined: 1/5/2012
Posts: 32


Yes we are looking to get him back into rehab at the nursing home he was at before and then moving into perm skilled care hall.  He did thrive there but was adamant about coming home and since he was doing so well we went for that.

 

The med he had the bad reaction to was Cymbalta -he was only on it for 2 weeks and it just had a total reverse reaction on him.  The withdrawal symps were like a heroin addict coming off of heroin...it was just awful.

 

Yes once we have the MRI this morning - the doc did mention trying him on aricept. 

 

I am thankful that my mom is in agreement with all - now we just have to see if we can get him approved for medicaid which their atty feels we can.  Just sucks that they worked so hard to have to get rid of it to get the level of care they need!


Cheryle Gardiner
Posted: Friday, January 6, 2012 8:47 AM
Joined: 11/30/2011
Posts: 529


Susan, I'm so sorry this has happened to your dad, but glad you've been able to get him the help that he needs.

My Jim did really well in rehab after his strokes last spring, and was able to come home. However, he started to decline and within three months was admitted - first to the psych ward and from there to a memory care home. I do believe there's something about the routine of a NH that helps them do well. At home, there are so many unexpected things going on - doorbells, telephone calls, people coming to the door - that I think it's more disturbing to them than we realize.

I hope you can quickly find a good place that you're comfortable with. Do come back often for support and advice. Many of us have been through this and can help.
Wilsontot
Posted: Friday, January 6, 2012 10:57 AM
Joined: 1/5/2012
Posts: 32


I agree Cheryle - I do believe going home unfortunately caused more confusion even though he started off great the first few days.  He is also not eating at home unless I just make him - which unfortunately usually causes a crying episode...and there is just nothing worse than watching your 85 yr old father crying and you can "fix" it!  I am very blessed that he is a good patient and does pretty much anything we ask him to do! 

 

Now that we do have the diagnosis of AD - I will be back more often to read and post as we move forward on this path.  It's overwhelming to read about all the meds everyone's DO's take....I have a lot to learn!  I do keep a notebook of all my dad's stuff including medical records and some personal notes I make myself...gotta get organized.

 

Thanks again!

 

Susan


Cheryle Gardiner
Posted: Friday, January 6, 2012 11:31 AM
Joined: 11/30/2011
Posts: 529


On the subject of keeping notes, this is an expensive solution, but I bought an iPad after Jim's strokes. I keep all of my notes on that, his meds (even though I don't administer them any longer), scanned copies of POA, POLST, and guardianship papers, and when he was home I kept the record of his insulin on it, as well.

I carry this with me everywhere! When I get a phone call from the MCH, or think of a question I need to ask, I can jot it down for my records. It's so much easier than paper records (besides, I have a tremor that makes my handwriting illegible!), and keeps me from having to make sure I have everything I need for doctor appointments, quarterly care meetings, etc.

Just a thought for those who are interested.
rose_ro
Posted: Friday, January 6, 2012 11:59 AM
Joined: 12/21/2011
Posts: 2431


Aricept and Namenda helped my mom a lot (we switched to the huperzine A, aricept started to bother her stomach)

 

I have learned to ignore when she says she wants to go home.  My mom said it again, and my father started to have this attitude ''well, I have to do what your mother tells me to do.''

 

I said a few things to slow that down, but rehearsed my ''I will not be here if you bring Mom home'' line in my head.

 

It doesn't matter how much they say they want to come home.  I know how it feels to want things to be better, and think it can work out.

 

They get attention, care, many good things in a lot of care places.  And they often do rebuild what they lost.

 

I think the Ipad is a great idea.  Stellar mentioned something some time ago about what she did.  I don't have one yet, but will!

 

There are times I think of my mom when she was here, and things were good.  But I think of the better things where she is, and some of the negative things here.  As said above, there are a lot of things going on in the house.  My mom kept jumping for the phone, even though I asked her not to.  She always thought it was a family member.  I was trying to figure out how to block some calls.  One problem, she really didn't have enough to do, and the winter was coming,.  less time to get out.

 

Now, the only phone calls she gets ARE family members, and she has a lot more to do.

 

I'm sorry you're going through this, all of you - dad and family - but I will keep it in mind for the times I miss my mom.

 

For her, she didn't recognize this place right away after just being in the hospital with diverticulitis in the summer.

 

In fact, if I had known some things then, I would have taken that opportunity to get here where she is now.

 

 


Johanna C.
Posted: Friday, January 6, 2012 2:59 PM
Joined: 12/9/2011
Posts: 10155


Dear Susan:  I am so sorry for what is happening and can certainly understand the  concern and sadness this is bringing to you and your family.

 

For myself with my mother, it was such a huge relief to have an actual diagnosis.  Not having one was like being dropped blindfolded into a foreign country without knowing what country and not speaking the language and not having a road map to get from one point to another.

 

At least with a diagnosis, one can begin to research, read and learn, learn, learn and understand.  One can begin making plans and monitoring care in real time in a realistic way.

 

It is a new path to walk, but you are not alone in this.  We here understand as most of us are walking similar paths.

 

There is a wonderful professional paper written by a Social Worker who specializes in dementia; it is well worth printing it off and keeping for a rerence.  Just Google, "Understanding the Dementia Experience" by Jennifer Ghent-Fuller.  It will pop right up. Woth the time.

 

Also, the Alzheimer's Assn. 24 hour helpline is available and if needed, you can ask to speak to a Care Consultant, they are highly educated social workers that specialize in dementia and they can be so very helpful when one has questions or needs input.

 

One can find their local Alz's. Assn Chapter by going to, www.alz.org/apps/findus.asp

 

I hope your mother is doing alright and that she is able to process all of this wthout too much upset.  Your parents are blessed to have such a supportive and caring daughter and you have the makings of a truly fine advocate.

 

I wish you well and hope that all goes smoothly with your Dad and your plans for him.  I think getting your Dad to Skilled Care for a bit of time will help to get him back up and around again before going to his new home.

 

Do let us know how you are doing, we will be thinking of you.

 

Johanna C.


Wilsontot
Posted: Friday, January 6, 2012 10:01 PM
Joined: 1/5/2012
Posts: 32


Thanks all for the kind words of encouragement and the suggestions!! 

 

Johanna - yes I have to agree - finally have it confirmed does give us the sense that yes now we know.  Back in October when he was discharged from the hospital one of the discharge diagnosis was dementia - however we had not had psych or neuro consults - so yes now we know for sure -now we can start making the right changes and decisions in his care. 

 

Mom is hanging in there -she just turned 83 last week and this has all been a major change for her.  My parents have been married 65 years and she has always taken care of him -the woman even still laid out his clothes sometimes!!  Dad has always taken care of the bills and household repairs and such - they definitely completed each other on many levels. 

 

After speaking with their attorney to get some advice on options for financial care issues - I had a heart to heart with mom about what is prob going to happen and she accepted better than I thought she would.  But she knows she cannot take care of him and that we have to do what needs to be done!

 

I will have to start checking into ipads or some sort of tablet -my bag continues to get heavier and heavier as dad continues to progress.  I will need a bigger bag or a wheelbarrel to carry his stuff!  I have made sure all medical offices we deal with have a copy of their HCPOA - I am so blessed that they took care of making me their POA 4+ years ago - so that has made things a little easier so far.

 

Thanks again!!

 

Blessings,

 

S


Iris L.
Posted: Saturday, January 7, 2012 2:21 AM
Joined: 12/15/2011
Posts: 16143


Cheryle Gardiner wrote:
 I do believe there's something about the routine of a NH that helps them do well. At home, there are so many unexpected things going on - doorbells, telephone calls, people coming to the door - that I think it's more disturbing to them than we realize.
You are so right about the interruptions and distractions, Cheryle.  Half my time I spend wishing I were in assisted living, but I know what I really need are fewer "goings-on" here where I live.  I get easily distracted and disoriented, and it's hard for me to get back on track.
Iris L.

rose1441
Posted: Saturday, January 7, 2012 6:21 AM
Joined: 1/7/2012
Posts: 2


Hi Susan, I hope everything turned out fine with your Dad. I just joined the forum this morning. I have become very fond of someone that has been diagnosed with Alzheimers(stage one). My family is very upset about it and  advised me to discontinue the relationship. We are both 70 years old and have a very active social life. My theory is how many good years that God gives me with him I will be happy with. The only symtom he shows now is having a memory problem. I am pleased to have found this web site,hopefully I can talk to people in the same situation.
rose1441
Posted: Saturday, January 7, 2012 6:26 AM
Joined: 1/7/2012
Posts: 2


rose1441 wrote:
Hi Susan, I hope everything turned out fine with your Dad. I just joined the forum this morning. I have become very fond of someone that has been diagnosed with Alzheimers(stage one). My family is very upset about it and  advised me to discontinue the relationship. We are both 70 years old and have a very active social life. My theory is how many good years that God gives me with him I will be happy with. The only symtom he shows now is having a memory problem. I am pleased to have found this web site,hopefully I can talk to people in the same situation.

Sorry Susan my name is Marie (Lake Worth Fl. )
Cheryle Gardiner
Posted: Saturday, January 7, 2012 9:19 AM
Joined: 11/30/2011
Posts: 529


Hi, Marie, and welcome to the forum. We're so glad you found us, but sorry for what brought you here. You will find a lot of support and knowledge from the folks here.

You're very brave (and obviously very fond!) to be taking this on so willingly with your friend. We will be here to answer any questions you have and help in whatever way we can. If you start a new thread (using the Add Topic button on the main Forum page) you'll find you will get more responses to any questions you have. Sometimes a new post gets "lost" if it's at the end of a long thread.

Do let us know more about yourself and your LO.