Friday, April 23, 2010

Brothers health might stretch my support thin...

After a few hours of sleep I'm wide awake and worrying in the wee hours of the morning.   My husband and I spent the past week at my Mom's house with my brother who's 18 years older than me.  He's living at her home now, paying all the household bills and tending to the lawn, etc.  It's beneficial for Mom and also for him.  I don't care for some of the things he does and sometimes I don't care much for him but this morning, I'm really worried about him.  He seems different and weak and vulnerable.  I am afraid something is wrong and that some day, I'll have to tell my Mom that her son is seriously ill.  What's worse than learning that your child is ill or dieing?  It will be tough for us all.

I can't help but think about my brother and feel for him - just WHAT I feel is what's keeping me awake.  My brother is not what I'd call a nice guy - at least not to those in his family.  He's been kind, generous and even loving to friends and even total strangers.  To us he's most often mean and impatient. He speaks with NO regard to people's feelings and drinks WAY too much which makes his attitude even more rude and crude. matter how much of a jerk he is, when any of us - parents, siblings, cousins, nieces or nephews - has really needed something or someone, he's come through.   For all his hurtful crap, he's as dependable as the morning; sometimes that's a cold, grey morning but it's still morning.  His attitudes indicate he doesn't like people, wants nothing to do with them or with us, yet lately he's showing some tenderness here and there that makes me reconsider what's really important.  His tendency to push everyone way might just mean that he needs some support all the more right now.   I won't do it because I care deeply for him or because he's been loving to me but I'll do it for myself.  It's selfish I suppose but I couldn't feel good about myself if I left him feeling that no one gave a damn.  I feel I owe him something, although I consider all "debts", both figurative and literal, well paid in full.   I just can't let him be completely alone and without a soul to care.  My husband and I fear that fate someday - no children and nieces and nephews scattered and busy with their own lives, who'll give a damn about us?  We'll have to be secure knowing that someone REALLY, REALLY loved us and cared dearly one point  in our lives even if one of us ends up alone. My brother doesn't have that to comfort him so I'll do what I can and feel good that I was able to show kindness to someone who could not show it to his family.  Some people might call me a martyr for that attitude but let them.   They don't have to live with ME.  I have to live with me, I have to look myself in the mirror everyday and I'd see something really bad if I weren't there for him.

Thursday, April 22, 2010

Mom's adjusting better at nursing home than assisted living

Mom's been at the nursing home for 2 1/2 months now and she seems to be adjusting better to it than she did to assisted living.   It's a combination of things - she has friendly tablemates that do not suffer from dementia; she's more likely to ask for help and used to it by now, and she likes the food and view at this nursing home much better than the assisted living facility.  It's amazing what  we might call minor changes will do.   Another BIG difference is that she's sharing a room.   She seems to do better when there's someone else around her all the time. They share a soda each afternoon and some chocolates each evening.  Mom also has empathy for her roommates condition and wants to help make her feel better.

Mom's also getting around better in her wheelchair with a new pad that prevents her from slipping down in the chair.  She's able to pull herself along with her feet and uses her hands to guide the wheelchair easily.   She's also starting to make jokes and pranks with other residents - which lifts her spirits.  On Monday an older gentleman got ahold of her wheelchair and pulled her down the hall to the dining room after she'd worked her way to her room.  She said he laughed the whole way.   So today, she quietly rolled up behind him and got a hold of a strap on his wheel chair, she put on her breaks and held onto the strap.  When the guy tried to move he was stuck; his feet just slid on the floor.   He was not able to turn around far enough to see what was holding him back so he just kept "running in place".   She let him go after 20 minutes or so!   I hope she doesn't get in trouble for harassment!!  It's all in good fun.

How can I help Mom adjust to her nursing home?

Wednesday, April 21, 2010

Medicaide should help but for a few months will put Mom's accounts in the hole!!

Mom just began getting Medicaide to supplement her rent for a nursing home and for a few months she won't have enough to cover all of her expenses.  I'll have to chip in about $100 a month.   Mom must pay nearly all of her income (social security and pension) to the nursing home.  She gets $30 for her personal needs and $200 for her supplemental insurance premium.   The deficit happens because Medicaide considers ALL of her social security - the grose amount BEFORE deduction of premiums for Medicare part B.   Medicaide is supposed to pay the premiums now but it takes a while for the Federal government to get the message and stop the withdrawals.   So for a few months Mom is required to pay out what she doesn't get.    I spoke with Medicaide and they said she will get reimbursed for the Medicare part B premiums but it could take 3-5 months until it's all said and done.   So, I'll make regular deposits in Mom's account and continue to make calls if it doesn't happen by July.  
Medicaide wants more than Mom dad gets Medicare premiums are still withdrawn medicare premiums put mom dad in the hole medicare premiums cause over drafts over drawn

Tuesday, April 20, 2010

"Everyday" medications may be source of confusion in the elderly

I suffer from allergies and fear what my future elder years will be like.   The more I read about eldercare, aging and drugs the more anxiety I feel.   Though I have yet to find data from large clinical trials, I read small articles and abstracts that list medications - everyday basic meds used by daily by MILLIONS - that cause confusion and memory loss in the elderly.    Loratadine is one example.  I take two of these daily for allergies.  It is the ONLY thing that keeps me from getting sinus pain and pressure that turn into dibilitating migraine headaches.  These articles indicate that even benedryl - which will cause sleepiness - causes confusion and memory loss.  

I can see where care givers and doctors would believe that confusion and forgetfullness are simply part of the aging process. They might continue to give these medications to keep the patient comfortable and treat these chronic conditions without realizing the cognitive impacts to the elder.   Additionally, I wonder about the long term effect of using these drugs for years and years.   I hope I don't have to make a choice between being able to function now and retaining my wits in 30 years!!  I'll keep researching and will report back as I learn more.

If you want to learn more or find helpful information, try these links for some basic information:

Consumer Reports:
Food and Drug Administration, Drug information for consumers

The Peoples Pharmacy online: and look at their GUIDES link for more information on the drugs that cause problems and treatments that might help.

Monday, April 19, 2010

Another decline - visiting Mom after 2 month abscense

I've been away from my home town and my Mom for two months and  I definitely see a difference in her.  It's not drastic but it is enough to notice.  She is more stooped. Her arms and legs are thinner and weaker; she is unable to stand on her good leg for more than 20 seconds and has more difficulty with memory.  I hate to see this "drastic" decline but I guess I could call it typical for her and her family.  We saw that same thing in my grand mother and her sisters during the last couple years of their lives. 

As much as it pains me to see this I am glad I notice because it helps me prepare for the inevitable.  It leaves me wanting to be more loving, more supportive and to spend more time with her because I can see that her time is short.  How long "short" will be is up to God and to Mom.   Sometimes I feel she's giving up and waiting but then she gets some unexpected visit and it really enlightens her spirit.   During a visit the other day we met other residents.  Turns out she was acquainted with them in some way over the years; it made her feel better.  She also got visits from a couple of male aides that work at her assisted living facility.  They showed up with a cold soda pop and had a chat with her.   She felt so good to be remembered.

I continue to be amazed at Mom though.  She is rarely despondent and rarely says "why me" out loud.   She is concerned about her roomate's welfare and how she feels. She watches her struggle and cry in pain and feels so bad that there is nothing she can do.  I hope I can be as caring when I become as limited as my Mom.  

New pad & old chair ...but now the Exec Director hates me...

A family counsel meeting between the staff at the nursing home, Mom, me and my brother went well overall - until the Executive Director joined in....  The social services staff at Mom's nursing home regularly requests meetings like this to discuss the residents' needs, wishes and to understand what's possible as far as care, comfort and support.   It's a good thing to do but often when bad news is involved emotions get heated.  I admit that I was hot headed over this pad situation but I was calmer and it was addressed to my satisfaction before the meeting.  At the family conference I realized that they were all worried about criticism directed at the therapists and didn't understand the significance of the pad in the wheelchair.   

We started the conversation by discussing Mom's health issues and asking her what would make her comfortable.  She had a small list - her chair (a rocker/recliner that no longer reclines), her 28" flat screen TV and less "man-handling" when she's getting help to the bathroom.     The TV can't go into her current room, the "recliner" was a no-no until we explained that it no longer reclined and she didn't have the strength to do it anyway.  The "man-handling" will be an on going issue that retraining aides will help but we all have to watch closely for rushed and rough treatment.   We discussed re-arranging furniture in Mom's shared room to accommodate the chair, bed and wheelchair... all easy fixes.   Mom, being her thoughtful self, said she didn't want to make adjustments if it upset Judy her room mate.  Mom is worried that Judy is in constant pain and said "she has it worse than me."   Mom fails to realize her weaknesses and limits but remains thoughtful of someone who's just as limited.  Judy is a dwarf with severe arthritis in her joints and hands.  She goes to dialysis regularly and seems to have some developmental disabilities too.   I am proud that Mom wants to  consider her wishes but will continue to push for Mom's comfort.   We agreed to try different ways to arrange the room to meet Mom's wishes.

We were all happy about the progress of things until I brought up the wheelchair....They were ready for this - they immediately said, "We'll have to get our Executive Director for that!" then ran down the hall to get her.   She is a large imposing woman, probably near 6 feet tall, wide shoulders and a booming voice.  She entered, quickly made the usual niceties and immediately began talking about how she'll "defend" her therapists, that mom refused treatment, that they did all they could....   I let her finish and then stood up, raised my hands in the "halt" position and said, "Stop, I'm not complaining about your therapists.  I believe the did all they could for her, I know Mom will refuse therapy and won't exercise, her arthritis limits that.  My issue ( I really emphasized this word - IS-SHOE) is that my Mom has spent TWO MONTHS in pain! For TWO MONTHS barely able to move, unable to right herself in a wheel chair because the pad was absolutely wrong and the wheelchair just a little too big. She was sitting like this (I demonstrated by sliding down on my tail bone and sticking my arms in the air) ON HER TAILBONE which caused pain in her lower back. Her shoulders rested on the back of the chair.  This pushed her arms up to the point that she could not reach the wheels to move herself around.    I noticed this immediately! I spent two days watching her and helping her before I said anything because I wanted to be certain of the cause.   If I had not brought the other wheelchair to demonstrate the fit, no one would have listened to me."  I remember speal this because I practiced it over and over before I went to this meeting.  I  was READY.  I continued, "She has suffered because of a simple pad, A PAD!! that was easily changed but no one took the time to consider.  It's a minor tweak but made a huge difference." I added something about everyone blaming it on her bad posture and failing to look beyond that to find a way so that Mom was able to right herself. 

At this point the nursing director chimed in, "She's right.  I've watched Elvina during the meeting and she is able to push herself back in the wheelchair now. Her posture is better." At that statement the Executive Director softened and began to discuss things WITH  us not AT us.  It all ended positively with an appointment for me to take Mom's chair in at 11am the next day.  She left but I could tell she was steaming on the inside. I believe they WANT us to think they care about Mom's comfort but only time will tell.  I will continue to visit daily for another week.   I am also more resolved to move closer to my Mom so I can see her on a more regular basis.  I can't go more than 4 weeks with out a visit.  Once I'm working again, I will try to hire someone to check on her every couple of days.

I have a greater fear that the Executive Director hates me now and will make Mom suffer for it.   She might transfer that "she's a pain in the ass" attitude to my Mom.    I will not be made to feel guilty because I find ways to make Mom comfortable and enable her to do as much as she can.   I will not feel bad about making the people who are getting paid to care for her do these things too.   I realize they have many people to tend to and need some repeatable methods to save time. I realize they can't remember every little detail about every single person but I CAN and DO expect them to apply some common sense.
wheelchair pads, how do you communicate with nursing homes