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!

Mom's small room inhibits her ability continue to do for herself

Since Mom's move to a nursing home we've see declines in her strength yet her cognitive ability remains pretty good.   We're concerned about her loss of strength and I believe that the actual facility is partly to blame.  She's in an "old style nursing" home - it's been around for at least 35 years.  Her father, my grand pa, died there; her brother was there after a stroke so we're familiar with it. The rooms are small and the bathrooms even smaller.  There are no grab bars, no handicapped showers - nothing that will enable her to help herself.   There is no room for a transport bar (see previous post ) so she can pull herself up from the wheelchair.  The TV is small and attached to some contraption on her bed; it's hard for her to change the channel so she doesn't watch it.  She can't have her recliner so sits in the wheelchair which is bad for her back.   I fear it will leave her even more stooped and bent over. 

I am really distressed by this - she LOVES TV news, CNN, PBS and animal planet.  This is good brain food for her and helps keep her current.   She might be physically weaker but if we want her mind and spirit to remain strong some changes need to be made.   I am really ticked off at her physician.  I'm sure his intent is very good - he wants her to get better care than he felt she received at the ALF BUT the tiny, crammed conditions are bad for her spirit.  She can't do the things she enjoys.  Her physical needs are met but the spirit is repressed.  I don't know what to do - complaining to him will fall on deaf ears; he'll dig in his heels and get more stubborn about where she lives. I plan to call the physical therapist at the nursing home to talk about Mom's progress and what she has to do outside of these daily PT sessions.  The administrators and social workers SAY they are very concerned with her quality of life there and WANT to make her happy but I'm dubious until I see / hear of some changes.

Contacting this joint is another problem for me. I call and I call - no answer.   Mom doesn't answer, most of the time the nurses station on her wing doesn't answer.  Today I called the main switchboard and an old tired man answered.  He was quite polite but it was obvious that he was confused.   Given all of this, I'm really concerned for my Mom.  All I can do is make phone calls and plans for my next trip to see her.   She'll have to hang in there until after Easter.  Poor dear.

Getting paid to care for grand parents... Approach with CAUTION!!

I just read this question on a care giver blog:  "Can I get paid to take care of my elderly grand parents?"  I had to respond, here's a summary of what I said:   The short answer is "Perhaps".. it depends on who is doing the paying and which state you live in. Sometimes family members can be paid by the state to take care of elderly or disabled family members. The amount depends on the state. Contact your local medicaide office, or state department of health,  to see what's possible.

If your grand parents pay you then there are tax issues that you as the payee need to address. You can act as an independent contractor, a sole proprietor or set up an LLC. The easiest - yet most expensive way - is to call yourself an independent contractor and bill them monthly. This means YOU must pay all federal, state and medicare and social security taxes. Be advised that the state and federal governments want you to pay estimated taxes on a quarterly basis and the federal portion alone is nearly 16%. Be assured that when ever money changes hands, the state and federal government want their share. To understand the requirements in your state, contact an accountant to learn what's possible and what's the most least costly option. ALSO be cautious about insurance - specifically liability insurance. If you're responsible for their care - lifting, dressing, bathing - then YOU might need insurance. If you're driving them around in YOUR car, then you might need added liability insurance. If YOU are hurt lifting them, then will their home owners insurance cover you? If you drive their car, are you covered?

From a personal perspective, caring for family members is probably the most stressful of all situations. Because it's FAMILY all of the dysfunction and behind-the-scene expectations come into play. Will your parents, aunts and uncles TRUST you? Will they help? Will they provide respite care if you want a day off? Who will handle the finances as these people age? What if one needs to go to nursing home and the other is left? Will you get paid half then even though you spend the same number of hours care giving? You need to think of all the things that can go wrong; of all the people who will help you or make it difficult and have a plan to deal with EACH. I would also suggest that your grand parents complete a Power of Attorney, living wills and other documents that outline EXACTLY what they want should they become incapacitated or die. It should be detailed and include WHO GETS WHAT - down to each stick of furniture and fork or spoon. This will protect them and YOU especially if you want your family relationships to outlast your grand parents. Sorry if I sound pessimistic but I've seen way too many of these situations get really ugly, really fast. I always  hope it works out and in most instances it's fine but there are always issues because you're dealing with people going through change and every one has a different opinion of what to do.

getting paid to take care of grand parents, getting paid to take care of handicapped getting paid to care for grand parents grandparents