Aging Parents Anonymous

I thought dealing with my parents and my in laws was a handful but I have to say the hoarding thing would be quite difficult.  My MIL keeps lots of things but they are organized.  We always laughed when the kids were little if you needed a container  or a lid she was sure to have one that would fit.  Oh and if you need Kleenex, toilet paper or paper towels she could supply the grocery store with them.  She is afraid she will run out.  Oh and throw rugs, when they are on sale and the color she like she buys thems because she says she will eventually use them.  But she does clean her closets out every couple of months and reaaranges and straightens things out so she knows exactly what she has stored and you could eat off of her floors.

Dear Althea,

In my "former life" I directed 5 Adult Day Activities centers in 4 counties here in PA. We utilized the senior companions from Blair Senior Services in our facilities here in Blair County and the other 3 counties as well. They were also assigned to our participants in their homes on the days they were not attending our programs. These individuals will help with simple housework, preparing meals and just providing that much needed companionship when family members need to run errands or are working. They are usually with the person for 4-5 hours a day, and if one companion is not compatible with your mom, then they will try to find one who is compatible.

Here is the link for the one here in Blair County in PA. Just contact the AA on Aging in your city. I know that so much of the funding is gone due to budget cuts from the Federal, State and County levels, so there may be a waiting list in your area. Staying in your own home for as long as possible is what everyone desires as we age.

http://www.blairsenior.org/content/senior-companion-program

Althea, the procedure your mom's doc is proposing involves looking at the esophagus, stomach, and duodenum ( = esophagogastroduodenoscopy or "EGD").  The websites I found said the EGD was synonymous with an "upper GI" endoscopy.  I guess that's because the duodenum is considered part of the upper GI tract.  But, you're right in thinking an EGD is more complicated, and possibly more risky, than a "regular" upper GI endoscopy that doesn't go into the duodenum.

My MIL was having upper-left abdominal pain about a month ago, and her GI doc proposed an EGD because he thought the problem might be with her pancreatic duct.  It would take an EGD to see the opening of the pancreatic duct (I think).  But he decided the EGD was too risky for her because her health was frail and she was a bleeding risk (on Coumadin).  A few days later, he decided maybe the pain was due to an ulcer, so he was going to do an "esophagogastroscopy" (without the "duodenoscopy").  He said it was much simpler to insert the scope only as far as the stomach.  In the end, he didn't do either procedure because the problem turned out to be something else totally unrelated.

My dad has advanced Alzheimer's disease, and he is on Ritalin.  He had lost his appetite around Christmastime and was refusing to eat.  He tends to react to illness like a cat -- whenever he's not feeling well (a urinary tract infection being the problem last Christmas), he isn't hungry and he won't eat.  One of the nurses insisted that his lack of appetite was because his Alzheimer's was getting worse and his body was "shutting down."

That was bull.  He just wasn't feeling well, plus he didn't like the pureed diet they were offering him.  Nothing like being handed a Dixie cup filled with pureed fish sticks to take away an appetite!  We went out that same day and brought him a chocolate milk shake, which he attacked ravenously.  So it was obvious that he was actually hungry and was plenty willing to eat; he was just being choosy.  Half an hour after that, he opened his Christmas presents with just as much enthusiasm as he showed with that milk shake.

The nursing home staff did offer to try Ritalin, which is known to increase appetite. That's an SE most people find annoying, but in Dad's case it was a good thing.  Once they resolved the UTI and got the Ritalin going, he started eating all his meals and gained back the 20 pounds he had lost. Sometimes the brain chemistry needs a little tweaking.

We are actually trying to arrange a "home aide" for my MIL right now.  She doesn't need a companion -- she needs someone to wipe up the floor and clean the carpet where she dribbles (she's incontinent); she needs someone to keep her prescription medications straight (she had set up her daily pill minder with a double-dose of Coumadin for this next week); and she needs someone to take her to her doctors' appointments (there are many).  She's also a fall risk and is getting PT and OT through Medicare and her insurance; but one home living agency thought a "personal trainer" might be more effective than the PT has been.  She refuses to pay the money it would take to provide her with all that personal care, though.  She wavers between insisting she can manage everything herself, and complaining that she can't get to her doctors' appointments and is too weak to walk down to the dining hall of the retirement center for her meals.  The center will deliver her meals for an extra $2 per meal; but of course she refuses to "waste" that much money... so she skips the meals, even though they're already included in her monthly rental fee.

All I want is for my elderly loved ones to be safe, so I don't have to worry constantly.  But, that doesn't seem to be possible. <sigh>

otter

althea, we're not totally sure what was causing my MIL's upper abdominal pain, but her GI doc decided it wasn't something GI-related. The pain was at the level of her lowest rib on the left side at first, but later she said it was in her lower chest on that side.

Her PCP had admitted her to the hospital because he thought she had pyelonephritis (her ureter on the left side is scarred and permanently blocked); so for the first day or two of hospitalization, the pain was presumed to be due to a kidney infection.  But her WBC went down, her temp was normal, and nobody could see anything abnormal on abdominal X-rays.  There was nothing new going on in that kidney, and there was nothing GI-related.  Even an abdominal CT came out fine. 

The "hospitalist" said she heard some indication of pneumonia in her lower left lung, though; and a chest X-ray confirmed it.  So the docs decided the upper abdominal pain was either because of the pneumonia or more likely was pleuritis.  It gradually went away.

Dad is a tall guy, and he weighed 220 pounds 18 months ago.  He lost 20 pounds over the next 8 months or so, which was okay because he had a beer belly and was getting more exercise than he got when he was at home.  But then he lost another 20 pounds in just 3 months, which made him look gaunt. That was during the time his appetite was poor; but nobody at the nursing home noticed the weight loss or did anything about his worsening condition.  The weight loss was discussed at a family conference at Christmas, and my sister and I had a fit about it.  That's when they started the Ritalin.  Some of the weight came back quickly because it was fluid, but he picked up the rest since then.  He looks and acts so much better now!

I wonder if your mom's doc could do just the upper upper-GI endoscopy.  If the PCP thinks it might be an ulcer, they could stick the scope just as far as the stomach.  Apparently, that's easy and low-risk (a walk in the park).  My MIL's GI doc had no concerns at all about going that far.  It was passing the scope through the pyloric sphincter and into the duodenum that made things risky, apparently.  (I don't know much about all that -- it's way above my pay grade.)

It might be helpful to have a "senior companion" with your mom when there are workers there.  If you're worried about the workers overcharging her or not doing what they were hired to do, the companion might be able to keep an eye on things.  The home aid agencies we've talked to are willing to help with almost anything. The only restriction is that some of them are certified to provide home health aid (paid through Medicare or health insurance), while others are not allowed to do anything medical at all.  I think it must be a licensing issue, but I'm not sure.

I appreciate this thread.  It helps to talk about these issues and hear how others are dealing with them.

otter

first a few things.. This is a wonderful thread.. I have been laughing and crying for the time it took me to read it.... and so close to home.  We've lost all our 4 parents in the last 5 years and often I was the one relied on (being a stay at home mom) to care for them..

Lucy88 .. it sounds like your father in law needs some calming meds.. for your safety if anything else.  maybe the fentanyl can be switched to a sedating drug... I know I myself easily quit all pain meds when I started this strong anti seizure med.

My father had severe Alzheimer's ... he came to lose his physical capabilities along with his brain.  My dear brother was living in his house and completely and lovingly cared for him in his final months.. for which we were very grateful.. He was a mean demented fellow.  ... tricking old ladies into shaking his hand and then squeezing so hard they would cry.  I mean really.  I was at his death bed.. he was in a coma, and I was telling him anecdotes of our past together, how much I loved him and appreciated him... and his eyes flip open!  He hadn't talked for about 5 days.  He asked me if I had a car... I said yes, and then he said "Why don't you drive it home... and gave a chuckle.  He had always been a great comedienne.  he was a teacher and used to being the center of attention.  Anyway he died the next day.. and I treasured his last little joke.

My inlaws lived next door to us.  We had built a house for us on their property.  My mother in law had Parkinsons and quit cooking about 12 years ago.  I cooked nightly dinner for them FOREVER it seemed.. took it over every night.  She became dependent on everyone for help with the bathroom and showering.  Her husband was very attentive and loving. 

He called me one morning and said he was having a stroke and would I please take him to the hospital.. he didn't want to pay for an ambulence and the stroke was 'slow'.  We got to the hospital and he didn't want to go to the emergency room.. he said "Go in.. get a wheel chair, take me into my doctor and he will transfer me to emergency care and I won't have to pay the 1000 dollar fee.  Well, my 3 le infants were strapped in the back with their juices and books and I guessed ok, with grandpa in the front seat to supervise they'll be fine.  I couldn't find a wheelchair and came back out to my  car and grandpa was OUT.  passed out.  So, I revved up the car, drove over the flowers and took a wrong turn and got into the emergency room entrance backwards.. I ran inside and could find no one.. NO ONE!!!

I got a gurney or tray like transport thing and ran it out to the car yelling I need some help.. I need some help.  Two nurse who were smoking on break (maybe) came running to my aid.. the doctor's came running and they got him inside quickly.. They came out in an hour and said "Do you know how lucky you are to have gotten him down here in time for us to administer this drug.. He'll be ok .... after a few weeks in supportive care (a nursing home).  Juggling the inlaws and their disabilities between nursing homes was the biggest challenge.   My little kids accompanied on all our trips.

Then they had a wreck and went into different nursing homes to recover.. it took a while..

Grandpa (I called him that, he was actually my FIL)  had heart surgery and was put in one nursing home.  He resolved to heal himself and get out and take care of his wife which he did.  His health was fantastic after that valve in his heart was renewed.  He got his wife out of the nursing home and brought her home.  She lived a couple more years.  He was so surprised and heartbroken when she died even tho she had been in hospice for months.

He then started coming to our house for dinner.  I loved him so much.  He was so loving, quiet, interesting, and smart.  At 93, his prostrate cancer came back and was in his lungs...  He ordered oxygen... We found a property, bought it, rebuilt the house and started getting ready to move and he up and died.  The relatives, the funeral, the sorrow and organization that had to happen.. it took such a toll that we delayed our move by a month.

Then my dear mother (who was delightfully and mildly demented.... I cannot convey what a joy she was to be with) simply collapsed and went to the hospital via my 'dear brother' one nite.  We rushed to her side and she said.. I told you I didn't want to go to a hospital... why didn't you just put me on the sofa?"  Apparently drugs did somewhat kill her.  She became dehydrated and a her blood pressure meds built up in her system because her kidneys were failing.  She died a couple days later.  After she passed on I kissed her forehead and she gave a great gasp... looked at me and smiled.  then slowly never took another breath.  I miss her a lot.  Anyway that delayed our move another month. We barely got into our house before the school year started... and we were very lonely without any parents to care for.

One thing I've found out on my medical journey is that when a group of doctors are 'working' on you they do not get together and see how the different drugs interact.. My onc. does tho and she takes the time to research, call the other doctors and get things straightened out.  I think some in charge  - whether it is us, or a primary doctor, MUST make sure the drugs do not interact.  With my parents I found out that the doctors don't review enough what drugs they are still taking and need to take.  Some are superflous.  I'm really glad I haven't died before my mother did.  83 was too young for her tho.. I really miss her a lot.

Best of luck all.

OH!!!! and the worse thing that happened was when my FIL (grandpa) was in a nursing home and he said.. "Heads up.. they came in and gave me the wrong meds this morning.. I got Jim's and he got mine.."  I'll most likely end up in the ER later.

I went to the front desk and asked them if they could take him to the emergency room ahead of time and they said "No.. it's against the rules... they won't even let us in unless there is an emergency"..

So anyway later that afternoon they called and said they were taking him in.  I called the ER and never got through to his direct nurses.  I had 3 sick kids ( the flu) and had been up the nite before and went to bed rather early.. I called the hospital in the morning and got through to the nurse's station.. the nurse kind of yelled "Who is this?".... and I said "I'm his ride"..  oh man,  she went off... and yelled "His ride?  his ride????  Do you know we had the paddles on him 3 times last nite.. and where were you... ?  I remember thinking what a bitch!  but I told her I was sleeping, taking care of my 3 sick kiddies who were still puking and putting his wife to sleep in her own bed.  My tired husband spent the nite over at his mom's.. Anyway, we were just exhausted, juggling everyone and everything.. Thankfully, when I went in, I talked with the very nice doc, who was very concerned about my tears.  Gramps was released back to the nursing home... but we moved him out of there the next day.... into another one closer to home.

I believe our elderly parents can be more work than kids.. bless their resting hearts.

BTW.. my inlaws really enjoyed the 'companions' who would come and visit and really looked forward to their time with them.  They were from our church so they already knew them.

I am grateful too.. as much as it was the pits, it was wonderful.

When my FIL came down with lung cancer for the second time he signed a DNR form which was given to the hospital. He came home for a few day, but had a set back and was put back in during the night by his girl friend. We got a call from the hospital about 3 am saying they had resuscitated him but felt he wouldn't make it through the night.

The poor man was never the same after that night. He was angry about being there, and was unable to understand what was going on. They tied him down which just made things worse. We finally got him into a rehab place which he promply signed himself out of. It was a very long few weeks, and was very hard on my DH and his family.

Hi ladies,

I deleted my previous post because I wrote about the very end with my mom, and I wasn't sure if it was too personal.  It is helpful to know the signs and symptoms of the end-stage of any illness, I'd be happy to answer any questions that anyone might have.  A palliative care nurse sent me information on what the last days and hours are, and how to help make your loved one comfortable and cared for.  I'd be happy to share it.  I understand how sensitive a subject it is for all of us.

My mother, Janet, passed away on May 25th.  I was lucky enough to be next to her. Below is her obituary that I wrote for her that we put in the Toronto Star.

A hug and a prayer for everyone who is fighting their own battle and who is also looking after a loved one.

____________

Our beautiful and beloved mother passed away peacefully on May 25, 2011 at the age of 78 after a long battle with Parkinson's with Dementia. She will be greatly missed by her husband of 52 years, August; children Susan (Alex), Glenn, Jenny, John (Deanna) and grandchildren Daniel, Leah, Jacob, Michael and Christopher.

She was born in England, survived WWII bombings, relocation to the countryside and TB outbreak. Retired, Ernst and Young account management.

From her we learned that kindness, generosity, humour and love cannot be destroyed or removed by even the most merciless of illnesses. Love can be found in the kitchen with meatballs, in taking care of someone less able and in watching over and protecting those you love. Love is long waits in hospital corridors together, watching for the sun to rise together to light up the room, and when your body fails you, those who love you will stand in to support you. Love is every medical professional who treated her with respect, care and who could make a joke to distract us from worry.

As children we were told to "stay within earshot" when playing outdoors, and earshot, we laughed, could mean within 3 blocks, knowing her ability to call us. She cared for all creatures and knew that we could take any sick bird, mouse or frog to her and she would nurse it back to health. She found beauty and value in family photos, flowers, teapots, cups, and any item to make my parents' beautiful home better; and she had an impressive number of items that she stored because they "were perfectly good and we might need them someday..."

That someday is now, as we miss her and are able to pull out items she saved from every decade and remember her by it.

Mom, we will watch over dad who, like us, feels so fortunate to have had you for every day that you were here with us.

UTIs-

My mom was wearing diapers for the last two years, and she had a few UTIs. 

It was difficult for my mom to swallow, so my first choice of liquid had to be Ensure.  But drinking plenty of water helps flush the system.  I kept a glass of water by her bedside at all times to remind me to give her water as much as possible (the last few months she could only manage about 3 glasses per day on top of 3 bottles of Ensure).

Hygiene of course is very important.  Cranberry juice works for some people as a preventative measure.

Althea, can the oregano oil be put on anything to make it more palatable?

Lucy-

You wrote about how aggitated your FIL is.  My mom was very upset when I first started to clear out and move some items in my parents' home to make it safer for her. (I had to remove area rugs, and any other trip items that my mom collected as if it were her job )

I don't know your FIL's diagnosis, but I know with my mom in her dementia she thought people were 'taking things' from her, because she was misplacing things. 

If your FIL's books are a problem, how about making it seem as if you are assisting him to make the decision?  Eg. 'Dad, I have a nice book case for your room, how about if I help organize your books nicely so that they're easier for you to find?'

My approach was to always play along with my mom.  When she was upset that I was removing her piles of magazines that date back to WWII, I said 'how about if I bring some of them to hospital patients who have nothing to read?'  She said she'd like that.

 I know that his being angry is hard, but to him, he might see that he's being attacked somehow and he has to fight back.  With my mom, I had to work with her to convince her that I was there to help her - even though some days she acted as though she was meeting me for the first time.

 Hang in there - it will get better.

Thanks Esti-  That's good to know.