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Helping the Great, the Magnificent Mr. Driftwood!!!
Dan the Man
Posted: Thursday, January 5, 2012 11:58 PM
Joined: 1/5/2012
Posts: 52


      Hello all you fine alz.org forum folks!  So I've been working with the lovely "Mr. Driftwood" for nearly 5 years now.  I just returned to New York from living abroad to find my sweet octogenarian in pretty dire shape.  Namely, his body posture is significantly more slumped/curved than it has been in the past.  It's gotten to the point where I can hardly make eye contact when he's not in bed.  The PT is bringing us a chair on Monday that pivots a bit and should provide him 20 or so degrees of rotation that will hopefully help remind him that there's more to this world than his lap.  In  case the chair doesn't work, do others have any insights on how to get this tough dude to elevate his eyes?  This is my first time in this forum, so I thought I'd air out all of my concerns going forward and see if any of you have successfully responded to similar issues or have any ideas for us.  
Mr. Driftwood's family is full of rockstar-nurturers and we're all pretty competent in enacting positive change for him, so no suggestions or pieces of advice will go unscrutinized.  In order of importance, I give you a few of our concerns:
1)  Eye-level
      -How to get him to raise his eyes?  Right now the only things that work are walks and playing catch (but its dern cold and he's really not that interactive during catch)
2)  Rotten Teeth
       -He won't let us brush his teeth anymore, so the inside of his mouth is beginning to resemble Stonehenge.  I have no medical or dental training, so am not sure if the cost-benefit of extracting the teeth (we took him for 8 extractions 3 years ago and he actually had no problem in the dentist's office, or neurological side effect to the nitrus oxide they gave him).  Because he seems pretty fragile these days (heart attack Nov. 3rd) I am wondering if this minor surgery is worth the physical toll.  On the other hand, he is grinding his teeth a lot which builds a lot of presumably bacterial spit up in his mouth and we also worry that he might swallow a meandering tooth.  Also, can he get an infection from having so much bacteria in his mouth?  Obviously we need a professional opinion here, but I figured I'd give you guys and gals first crack.
         -Any thought on how to get into his mouth in the meantime?  He's become very rigid and won't open his mouth for heck or high water
3)  Diet
          -He eats mushy food consisting of sweet potatoes, chicken stock, pulverized chicken, and some other veggies.  His stools these days are exceptionally loose and I'm thinking of a dietary switch and/or more fiber.  For breakfast he gets pretty gooey sweetened condensed milk  oatmeal mixed with a raw egg.  This is his wife's domain, but he's been eating thusly for a long while now.  Suggestions, revisions?
4)   Medications
           - He gets 4 probiotic pills daily, 2 metropolil (if BP is high), Namenda, Ecotrin, and folic acid.  What medications have worked for you?  Or supplements, or vitamins?
5)  Caregivers
           - As a caregiver with the "Driftwoods", I'm pretty aware of my limitations and of the ever present shadow of burnout.  As such, I always "escape" for a few months of the year, while hiring HHA-types in my stead.  That being said, where have you all found your best caregivers?  I am looking for someone like myself who will treat Byron with dignity and love, who can see through the Alz to the guy who is still inside (he winked at me 2 nights ago). I know it's a tough job and we've had about 12 caregivers other than myself over the years, mostly found via Craigslist.  It's a dream of mine to have someone on the same page as me who can think humanistically with me and problem-solve on behalf of Mr. Driftwood and his family.  Most of the folks we've found haven't made the grade, so I figured mebbe this community can atune me to a community of awesome inspired impassioned caregivers for this most deserving family (I suppose every family is equally deserving, though, huh?)  Whadja say, any recommendations?  Byron is really not doing very well right now and I think its going to take the right caregiving milieu for him to snap out of his fog as he has done so many times in the past. 
Ok, I think that's about all I have for now, so eagerly await any and all replies!  Hey, here's a thank you for those who made it this far, may it give you a smile as it does just about every time for me:
Dan and Mr. Driftwood at Play:
Adieu and Thank You!!!


MacyRose
Posted: Friday, January 6, 2012 8:01 AM
Joined: 12/15/2011
Posts: 3928


Dan,

I may have a solution for you in regards to the teeth issue, I have not personally used this product, but I have used a similar product for dogs and it worked amazingly well and I will say that my dog likes to have her teeth brushed even less than your Mr. Driftwood.  I have a dog who totally lost out in the "Good teeth" gene pool and gets lots of tartar, gum inflamation and has lost several teeth - fortunately minor ones, but still - I hate for the vet to have to remove her teeth. Also, I was having to have her teeth cleaned every 6 months - which includes general anesthesia, which I hated to do to her. It was also very expensive to have this done every 6 months - $500 or more per year.  I didn't mind paying so much - I treat my dogs as though they were my children, but I did mind her having to undergo general anesthesia so frequently.  One day, I was rambling around on the internet and found this liquid canine teeth cleaner so I ordered it.  To  my amazement, almost all the tartar and gum inflamation disappeared within two weeks of daily use.  So, I figured there must be something similar for humans and I came across this human formulation of the same product:

 

http://www.petzlife.com/catalog/f-rst-defenz.html

 

and this product which is different, but does the same thing:

http://www.healthyworldstore.com/Liquid-Dentist-p/liqdent.htm

 

Perhaps one of these products similar one will work for Mr. Driftwood. 

Teeth grinding can be managed with a mouth guard - this being IF Mr. Driftwood will allow it to be used.  Dentists can build custom ones that are hard and too big to be swallowed.   However, there are many mouthguards that can be bought online, too.  It would be a question of trying different ones to try to find one that Mr. Driftwood likes.

 

Regarding diet, I think that a raw egg is a bad idea unless you know for sure that the egg has been pasturized.  Raw eggs can contain salmonella.

http://www.safeeggs.com/eggs/raw-eggs 

 

My suggestion would be to replace the raw egg with a boiled, chopped egg.

 

Cooked rice, boiled milk, applesauce, bananas, creamy peanut butter,  buttermilk, cheese, marshmallows, pretzels, toast, yogurt, and tapioca pudding all help to bind stools.

 

As to finding a great caregiver, it would help to know where you are.  I found an amazing one through a local caregiver company.  She was so good, I actually hired her out from under the company. Anyway, if I knew where you were, I could look up similar companies for you and you could call them with requirements and then interview the folks they send to you. 

 

Hope this helps.


Dan the Man
Posted: Friday, January 6, 2012 9:22 AM
Joined: 1/5/2012
Posts: 52


Thanks so much for your response!  As Byron has put his mouth on lockdown these days, it's nearly impossible to get him to open wide except to eat (which thankfully he does very greedily), so I'm not sure if we'll be able to get those products or the mouth guard in, but I'll do my best to think outside the box and get him to let us clean 'dem teeth.  Also, thanks for the egg advice, his wife gets tips from all over, and I think that one that is better served cooked, too.  Now, regarding location, we are in New Rochelle, NY and are on the hunt for those aforementioned caregivers as we speak.  If you have any recs for reputable agencies that can connect us with the right person, that would be invaluable to me and this whole family!  Gorwsh, it's so nice that this community exists wherein we can trade insights, advice, stories.  I promise to trowel this forum and offer whatever help I can as well, and will encourage the "Driftwoods" to do so also.  Again, many thanks for your generous reply! 

 
Sincerely,
Dan

 


Stephanie Z
Posted: Friday, January 6, 2012 10:28 AM
Joined: 12/15/2011
Posts: 4219


Hi Dan, I looked at several of the videos you have posted featuring Byron. I am so impressed wih the affection you all seem to have for him. Despite the problems you mention above, it is obvious he could not be in a better place,

Regarding dental care. Short of a trip to the dentist, his teeth will probably continue to deteriorate. However, getting him to chew some apple (peeled and cut in small pieces) right after he eats anything, will help to clean his teeth and stimulate saliva which also helps.

You can also bribe him. (Byron, we can sing a song after we brush your teeth) Substitute any reward he particularly enjoys.

Diet wise, it does sound like he may need a change. More greens might help, also some metamucil to bulk up his stools a bit (but if you use it, make sure his fluid intake is good) There are plenty of sites on line that you can access for a well balanced diet.I know you said he gets oatmeal, but he may also benefit from more whole grains.

I'm curious if he is fed or still able to do it himself. If he can put anything in his mouth, try finger foods. It's more rewarding for people who have AD to feed themselves if possible even if they use their fingers.

His posture sounds like he may have some back problems The most common would be kyphosis or dowagers hump. Has he had a doctor check him for this? Also, I would be concerned that since he is less active, his joints might stiffen up

ROM exercises are very important if you have to stay in bed or in a wheelchair. they help keep the joints and muscles as healthy as possible. Without these exercises, blood flow and flexibility (moving and bending) of  joints can decrease. Joints, such as your knees and elbows, could become stiff and locked but since he cannot do the exercises on his own, someone whould do passive ROM exercises  for him.

Right now, where he is in his dementia, I would recommend you get your caregivers from an agency if possible. The reason for this is that an agency will send a nurse out to do an assessment on him to see what he needs. She can instruct the caregiver about ROM exercises and give you additional information on what he needs. Agencies also usually have PTs and OTs available.The nurse or PT can also teach the family to do these exercises as well.

If you want him to raise his eyes, try giving him something bright to look at (and will also make him laugh) I'm a nurse with years of dementia care experience. At times my staff wore clown noses. Sometimes just for fun, sometimes to make a resident laugh to change his mood, and sometimes to get residents to focus on their faces.

 

Byron seems to still have a great sense of humor. This is wonderful. Don't let him loose it. Continue to "play" with him. He still needs a little exercise if possible. Get a soft fabric ball to play catch, let him fill a bird feeder if he is still able (hard to tell from the videos), Obviously he loves the piano. If he is still able, give him access as much as possible. Play his favorite music and "dance" with him. (get him to sway, move his hands and arms, tap his feet)

Rhythms can be helpful. tap a drum with him to get his attention and see if he can keep up a beat pattern.

These are just a few suggestions, the more you tell us about him, the more we can suggest. Keep in touch.

Hope some of this helps

Stephanie

 

 


Dan the Man
Posted: Friday, January 6, 2012 11:13 AM
Joined: 1/5/2012
Posts: 52


Hi Stephanie, thanks so much for your thoughtful response.  Alas, the Byron you see in those videos is at least a year younger.  Present-Byron seems like he's swooning towards Stage 7.  His verbal comprehension is nearing nil, and his general awareness has drooped significantly along with his posture.  So, bribery is pretty much out.  I liked your apple idea though he's been eating "mushified" vittles for years so am not sure how he'll react to something as wholesome, errr... quartersome, as apple slices.  It's worth a shot though for certain!
Regarding ROM, we've been stretching him for years, though I admit to forgetting often and growing disillusioned with the stretches as its never physically evident that there's any effect at all.  Although, I know it,s good for him, it's grown more difficult since he has become so physically rigid.  Honestly, I'm kind of at a loss here for the first time.  I've always been able to connect with Byron, but his fog is sooo deep this time around.  I can still make him laugh and draw from him half-lucidities, but it is pretty exhausting.  I always thought that loving interpersonal interactions and memory therapy were his lifebloods, but now these infusions seem much more difficult to administer.  I guess that's why I'm reaching out here.  His insatiable hunger inspires me to keep pushing him, but I could sure use some new ideas, especially from folks familiar with stage 6/7.  It seems really possible to me that if we address his rotten teeth, maybe everything else will return to pre-swoon baseline levels, but I'm wary of foisting a huge dental excursion on his family, who have nobly earned their exhaustion.  
Anyway, sorry for the long-windedness, I don't really share all of my thoughts with his family for fear of further fretting them, but very much appreciate having this forum to consult.
Thanks again Stephanie for your considerate words and insights.
Dan

MacyRose
Posted: Friday, January 6, 2012 12:15 PM
Joined: 12/15/2011
Posts: 3928


Dan,

The liquid teeth cleaners don't require brushing and they can be swallowed, so I would pretend it was a treat and have Mr. Driftwood drink it  - however he prefers to take liquids these days and then encourage him to swish  - he won't know it's cleaning his teeth!  This way, you are not invading his mouth.

 

I would start the search for an additional caregiver by calling this company:

 

http://www.rightathome.net/

 

The closest office is in Englewood, only 10 miles away.  This is the kind of company I got a caregiver from when I needed one and she was AWESOME!

 

There is a trick to finding these companies - you can google senior caregiver or caregiver company, but I also found that googling caregiver jobs and then looking up the various companies worked great!  So I also found these for you as well:

 

http://www.seniorhomecareny.com/p/home_care/home_health_aide/new-york-ny-10023/senior-home-care-4198?gclid=COri-tH-u60CFXO-tgodfT9QAg

 

http://www.homecareassistance.com/?gclid=COSAjuf-u60CFW-HtgodT3tz_Q

 

http://www.partnersincareny.org/contact-us

 

The secret to getting a good caregiver, as you know, is interview, interview, interview and select carefully.  But the advantage of going through a company is that they know who has what experience and they also know their peeps are dependable and honest - select someone who has worked for the company for several years - put that as a requirement for who you interview. 

 

Wishing you the best!


skericheri
Posted: Friday, January 6, 2012 2:49 PM
Joined: 12/10/2011
Posts: 287


Dan---Welcome.

 

I watched several of your YouTube videos.  The baseball one was my favorite.

 

I, too, recommend using an agency.  Linda, who was employed by Caring Angels turned out to be the caregiver of my dreams. She had long term experience working with individuals with A/D...Instantly established a bond with Charlie who tended to be grumpy with strangers...Easily fit into our household because she was only a few years younger than me...but...Would have had difficulty pushing Charlie's wheelchair over uneven grassy areas.  Because of potential risks she would have never have considered using Craigs List.

 

How were the Driftwoods lucky enough to have found you?

 

An added thought---Charlie had neck problems that caused a downward view of the world.  A wheelchair that had a reclining back rest may have helped. 

 

 

 

 


Dan the Man
Posted: Friday, January 6, 2012 8:27 PM
Joined: 1/5/2012
Posts: 52


Hey Macy, thanks so much for the teeth cleaner idea.  We'll definitely give it a shot as it would be much preferable to dental extractions.  I called all of those caregiver agencies, but their rates were out of this family's league.  I suppose they've been pretty decimated financially after 5 years of in home care for Byron (though I'm sure they don't regret any of it).  Looks like the $23 or so per hour average that is the going rate is not feasible for them.  Which brings us back to Craigslist for the umpteenth time.  I really shouldn't complain too much about CL because our hit rate for rockstar caregivers is probably around 25% of those hired, but it seems all the good ones move on relatively quickly for nursing careers, or other pursuits.  And you couldn't be more right about the interviewing process being by far the most critical.  I think Byron's wife and I have been able to tell who would excel and give Byron the attention he deserves and who would "honeymoon" for a short while before wilting under the more or less Sisyphean tasks of mental and physical maintenance we bestow upon them.  We'll see what happens this time, maybe we get lucky again; hopefully we do.  

Cheri, regarding how the Driftwoods and I connected, a graduate student friend of mine read an ad the Driftwoods put out on a CUNY list-serve and forwarded it to me.  This friend knew about my psych background and thought I'd be a good fit.  Apparently the Driftwoods thought so too, and the rest is history.  Byron has seen many changes since I've been with him, and I've taken on duties I never thought I'd be capable of (very weak stomach), but I have few regrets and until recently he has handled his Alz exquisitely well, I'd say, using general perceived happiness as an indicator. 
Lastly, I can't wait for this reclining wheelchair to come on Monday.  I hope it makes a world of difference though am increasingly preoccupied with how the state of his teeth may be affecting the rest of him...
Anyway, it's so nice to be part of this community.  I'll keep an eye on this forum and do my best to write folks back, though apologize in advance if I am sometimes slow to do so.  Thanks again!
Dan 


MacyRose
Posted: Saturday, January 7, 2012 10:40 AM
Joined: 12/15/2011
Posts: 3928


Dan, there is a work-around with these care-giver agencies.  When I hired one, I paid $15 per hour (I'm in the South - it's cheaper down here).  Anyway, I found out my caregiver was actually being paid $8 per hour, no benefits.  So after 3 months (when my insurance ran out) I offered her $10 per hour to work for me directly and she resigned from the company and started working for me fulltime. Of course, it helped that I'm a really great boss and treated her like part of our family so she was thrilled to work directly for us while I recovered from my injury plus make $2 more per hour.  So you might want to suggest the Driftwoods try this methodology of  finding someone via an agency then hiring out from under the agency once they are sure this is someone they want permanently.

 

 

 


Dan the Man
Posted: Saturday, January 7, 2012 11:09 AM
Joined: 1/5/2012
Posts: 52


Wonderful tip Macy, we're going to try that workaround over the upcoming week before maybe resorting to CL.  And I'm picking up that liquid teeth cleaner in the next couple of hours.  Any recs for what brand might work best?  I'm certain Byron won't swish it around his mouth, and hope he doesn't just spit it out immediately, but it's a better idea than any I have, so will give it a shot.  Thanks again!

Dan


skericheri
Posted: Saturday, January 7, 2012 12:40 PM
Joined: 12/10/2011
Posts: 287


Dan---Thought about the work around…but…remembered a contract clause that stated that I would be liable for a $5000 penalty if I got caught by the agency.   

 

Your Mr. Driftwood reminds me of Charlie, my partner of 18 years, who passed in October.   

 

Charlie had dental problems.  A dental problem set off chain reaction that lead to a significant decline.  Before his problem erupted…Like the Driftwoods we were in a damned if you do/damned if you don’t situation.  Charlie was capable of eating regular food…did not suffer from lock jaw…and…extraction using laughing gas was possible. After consulting with his dentist I opted to have offending teeth removed individually on an as needed basis.   Had I been able to foresee future events, I would have opted to have all damaged teeth removed as quickly as possible.

 

Charlie remained kind throughout his A/D journey.  Like Mrs. Driftwood we could not afford to pay the going rate for caregiver services. The emotional toll of dealing with Charlie’s physical problems for over a year caused me to dig deeper into our pockets.

 

Before Mrs. Driftwood finds herself in a similar position I suggest that she contact her local Social Services agency as well as the Federal Agency on Aging.  There is help available…Some programs that are even set up on a sliding fee schedule.

 

She should also consider contacting some local hospice services and asking Mr. Driftwood’s doctor to request a hospice evaluation.  Their services are paid for by Social Security… and…I suspect not subject to Medicaid Recovery programs.  They offer in home services…and…When an individual has an A/D diagnosis they have been known to bend their 1 year rule. If that does not pan out, ask the doctor to recommend in house physical or speech therapy.

 

If Mr. Driftwood is a veteran, Mrs. Driftwood should contact the Department of Veterans Affairs.  They offer many services.  There is even a pension program called Aid and Attendance.  Their financial guidelines are more generous than Medicaid.  Below are 2 links.  The first has general information and the second goes deeper.

 

http://www.veteranaid.org/ 

 

http://www.vba.va.gov/bln/21/pension/vetpen.htm 

 

It looks as if Mr. Driftwood may be a candidate for a geri chair.  Here is a link to a transport chair that can serve as both a wheel and geri chair.  Unfortunately the Invacare  HTR5500 comes with a Cadillac price tag.

 

http://www.invacare.com/cgi-bin/imhqprd/inv_catalog/prod_cat_detail.jsp?s=0&prodID=HTR5500 

 

Pardon the information overload.  A reply to this post is not necessary.

 



MacyRose
Posted: Saturday, January 7, 2012 1:09 PM
Joined: 12/15/2011
Posts: 3928


skericheri is right about the clause in some contracts.  With my situation, the lady had been working for me for 3 months and we were paying week to week at that point.  She and I had been talking about her work history and she told me what she was being paid. She mentioned to me that she didn't like her boss. I mentioned that my employees start at $10 per hour.   She resigned a few days later and came to work for me.  So, it wasn't exactly a direct offer, but she knew what I meant and took advantage of the opportunity.  Prior to that I had earned her loyalty by doing some pretty amazing things for her that convinced her I had her best interest at heart and was her real and true friend.  My story with my caregiver is extremely similar to the movie "Miss Pettigrew Lives for a Day," Pygmalion makeover and a whirlwind lifestyle and all.  My caregiver entered a world she had only dreamed about when she came to work for me and from the first day I made her a full participant in my world and opened up opportunities for her.  To this day, she is one of my best friends - she even has Christmas dinner at my house. So you need to have real trust with the caregiver to make this kind of transition in employment work, but it can be done.

 

As to what product to try for Mr. Driftwood - I've only used dog products from CET for my dogs so I have no idea how well the human products work.  But this product for humans appears to be similar and there are good reviews:

 

 http://www.healthyworldstore.com/Liquid-Dentist-p/liqdent.htm 

 

Maybe it would be a good option to try first.


Sheryl726
Posted: Saturday, January 7, 2012 1:31 PM
Joined: 11/29/2011
Posts: 521


Welcome to the forum and so glad that you have found us.  The unput that you will give and advice that you will receive are the reason we are all here! 

 

The feeling of everyone really "getting" what we are talking about is so great as most of our friends do not really understand what we are trying to do for our loved ones. 

 

It is so hard to watch them "go away" but we live for those moments that we know they are there and want to stimulate as many of those times as we can.

 

Sounds as though you all really have good interaction but it does get harder in stage 7.

 

The posture lean is uaually as their balance is going.  My mother's went early and she gave up walking as falling scared her so badly.  She hated the geri chair so hope that you have great luck with it.

 

The eye contact is hard as they are turned inward I think.  I find that if I move into Mother's eye range and then move really slowly she will follow me sometimes.

 

Going from one side of the bed to the other can make a difference in her reaction. Go figure that one.  I can be her best friend on one side and she will be angry on the other.  No set pattern or side so just work with it.

 

Ensure or one of those types of drinks will help dietary.  If he does not like 2 envelopes of Carnation Instant Breakfast mixed with 8oz milk give as much nutrition as Ensure but taste better.  This was from a diatician that I heard and worked for Mother until she reached the point she will just drink her Ensure right down like a milkshake.

 

Mother will eat an apple if I slice and peel it and eat with her.  She has always likef them but peel seems to cause issue.  She will chew somethings but others, well they come back out.  Just be aware of aspiration of some of the things that you feed.

 

Good luck with caregiver issues and looking forward to reading your post.

 

My mother is 82 and is in stage 7.  She has no health issues at all and we have her at home.  She interacts sometimes and other not.  She has a great time in her imagination.  She will tell you things that are like wow.  May have more fun than us.....lol


Dan the Man
Posted: Saturday, January 7, 2012 6:49 PM
Joined: 1/5/2012
Posts: 52


Thanks so much for the ideas and insights, especially the financial tips (Byron was in the Marines).  It's certainly not information overload and I/we appreciate every bit of it.  I'll get back to youse sweet forummers manana as I just finished a tougher shift and am gonna go for a drive.  Have a good night, and don't forget to look at the                   moon; it's purdy pretty this evening!

Dan