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

Wrong wheelchair leaves Mom in pain and uncomfortable...ARGH!!!

I had not seen Mom in two months due to travel and a visit to my home out of state. When I finally got to her I was angered all over again because of the way Mom was left sitting in a wheelchair that's obviously too big for her.    The size means she slipped around and was unable to sit up.  She slid so far forward that she could not use the arm rests.  Without the ability to use her arms AND her legs at the same time, she could not push herself back up in the seat. The moment I saw her it was obvious to me that the wheelchair was a poor fit.    She was slumped down so that she was "sitting" on the back of her hips and some of her weight was on her shoulders.   This position will aggravate the arthritis pain in her lower back and hurt her upper back where she's stooped with a "dowagers" hump.   I was immediately INCENSED that she would be left sitting in a position like this.  

I didn't rush to judgement or yell at anyone but I sure wanted to!!!  It took all of my will power NOT to come unglued on these people.  I spent two hours with her, watching her move about in the chair and helping her get "adjusted" to a more comfortable position.   It became clear, as I watched her, that the pad in the chair was the problem.  It was thick and spongy, it felt like a bag full of wet noodles.  When Mom slid forward, the bulk of the pad bunched up behind her preventing her from pushing herself back to a more comfortable position.   So - two days later I took a smaller wheel chair to the nursing home and MADE the therapists put Mom in it to compare the "fit".   They DID NOT want to do this comparison.  They bull-headedly argued that she needed a pad, that she had poor posture and was "just bent this way now".  They said she wouldn't TRY to push herself up.   I had to yell at them to listen and to take a good look at her in the chair and pad.

With the original "noodle" pad, it was not a good fit, the seat was not deep enough.  I complained about the pad and an "aide" - NOT ONE OF THE THERAPISTS - suggested using a different pad - it made all the difference!!!   With a firmer pad she was able to use her arms and legs to push herself back when she slid forward.  The new pad also had a slight rise in the front that prevented her from sliding so far forward that she was able to push herself back BEFORE getting so far down in the chair.    So - she ended up in the same chair - tho it's still a bit too big - and a new pad.  Now she's comfortable  but I wonder what damage was done in the two months she spent "bent" in the large chair and bad pad.   For a weak 89-year old, two months like that can do lots of harm - she could loose what little strength she had to help herself.

Next - a meeting with the social workers and administrator to discuss Mom's overall comfort and this damned "Chair situation"!
wheelchair pads

Therapist FINALLY gets it but it's too late to help Mom

After finally getting Mom's therapist on the phone, some changes are made but I'm wondering if it's too late to do good for Mom.   I learned a lot from talking with Mom's therapist.  Mom's supposed to go to therapy for an hour a day.  The doctor ordered 30 days of it then a review to see if it's doing any good.  The therapist is frustrated with Mom because she thinks Mom's not trying to get stronger. The therapist spent 10 minutes complaining to me about how uncooperative Mom was.  "She'd rather have a Pepsi with a friend than go to therapy." She seemed pretty upset over the whole situation.  The therapist didn't realize Mom is 89 nor that she's grown increasingly weaker over the last year.   She didn't know Mom was successfully using a lift pole in assisted living.  She didn't know Mom was complaining about her wheelchair, that she couldn't work the phone or TV, or that she was willing to try using the bathroom by herself.   I was ASTOUNDED and mad as hell because this information wasn't transfered at the time Mom was transferred to this joint! (One that her physician INSISTS is the best in town.) This time it was MY turn to get mad and frustrated.   I had conversations about her history, abilities and such with the Executive Directior and with Social Services staff, and, a few days later, the nurse on mom's floor.  All of them said they'd "spread the word". None of them suggested that I speak with the therapist.  They all knew she was there for 30 days of therapy!!  It's quite logical to me that the therapist would need to know a LOT about Mom to judge her improvement.   Unfortunately, I didn't realize they would not communicate.  I never expected that I would have to DO THEIR DAMNED JOB!! 

Unfortunately, this seems all too common.   No one seems to have the time to do more than the immediate task in the moment.  Being a process person, and one who's made a living moving data around into usable information - I am VERY frustrated by this and wonder how much harm has been done to my Mom because of their inability to see that they need more understanding.  They need processes to look at a patients WHOLE condition and history when they arrive.  They need to orient the patient/resident to their surroundings VERY well and spend some extra time for a few days to get the resident/patient out of their shell and involved.  They need to ask lots of questions of the patient/resident and family. They need to LISTEN to what each says.    The therapist didn't realize how old my Mom was for crying out loud!!!  How can she provide good therapy if she didn't think to look at her age.   It doesn't give me much confidence in the ability of this place. I'll finally get to visit next week so they'd better get ready - the inquisition is about to begin!