Adapting to Change as the "Child" of an Aging or Medically Impaired 'Framily Member'

Do you have someone in your life who is dealing with the transition of the 'flip flop' of going from being the 'child' to becoming the adult?  That can happen at any age, as many children have to help out due to parent incapacity of one kind or another, and sometimes much later in life.  It's something becoming more commonplace as the average life span increases combined with the burgeoning 'bubble' of baby boomers, the first of which turns 65 this year. I've given some thought recently to whether this is an easier process for those whose parent becomes mentally disabled gradually and before the physical changes occur and at what point in the 'younger person's life' this is best to occur.  Most certainly I'm hoping people will all look to the situations individually and look at it as a time for growth no matter what occurs.

As many of you know, I've been an occupational therapist since the mid 1990s and I have specialized in the past in driving as well as working with older people/geriatrics and neurological issues, while being in environments with people from the day they've landed in the hospital through acute rehabilitation or subacute rehabilitation, and more recently outpatient clinics.  But I think I learned an equal amount in the past 15 years from having an aging and declining parent, and now my thought and heart go out to my friends who all have at least one parent they are having to help along that path. I hope to continue to have valid, progressive, streamlined and FUN information for them at Lumigrate and the past two weeks have provided me with ample opportunity for soliciting input from Lumigrate's experts.  Karen has been at the top of that list and is currently working on something related to wheelchairs and car transfers for someone who is a passenger and not driving. In the last two weeks I have had two people with parents on oxygen inquire about the loss of function and safety concerns they have for their mothers who are both on oxygen.

As some also know, the timing of my becoming an OT coincided with when I 'came down with' fibromyalgia, and I'm convinced at this point in time it was simply due to too many demands on my body/mind/spirit which is how we look at medicine at Lumigrate according to the 'integrative' paradigm.  I also talk with people a lot here about the resources of time/energy/money.  I have dedicated myself to finding 'more time' to build information for those who have the stress on them now so that we can offer solutions to alleviate as much as possible the time / energy / money drains for their parents but the reality unfortunately is that the times are indicating that the planning that was done in the past for retirement didn't take into account the drastic changes in the medical system today.  It's very concerning to say the least.  I've been 'used to' the 'realities' of nursing homes for some time and found myself profoundly concerned two weeks ago when helping a friend's father with his rented wheelchair which was issued to him -- a man with pain and agitation and a history of falling when getting up unattended from the wheelchair -- withOUT a cushion!  

I called Jan Casserly of APA Wheelchairs (apawheelchairs.com/) and was pleased to hear they have a NEW internet presence launching in March of 2011 to meet this kind of demand and answer questions and was so very pleased she had provided me with a cushion in the past to 'show and tell with' that I could loan to my 'framily member' until the family (with my continued shepherding) could get an appropriate LIGHTWEIGHT wheelchair so the wife doesn't further injure herself.  I started out asking 'isn't there a law in SNFs that people have to be on cushions but does this not extend to when a chair is issued as a rental and paid for by Medicare?"  Luckily for us, Jan's APA Wheelchairs is focusing on the NON-Medicare / private-pay market, so she was not familiar with the 'rule' because she just uses good sense and does the right thing for the patient/customer and makes sure people have cushions and the proper kind for their needs! 

Recently I've been regrouping personally and on Lumigrate related to the end of my father's long and couragout course with the second most common form of dementia, Lewy Bodies Disease.  I realized last year how many people with chronic illness also had aging and ill parents and how many of my education minutes were going every day to talking about their parents.  Any good therapist knows you have to 'treat the whole system'  I'm going to refer to it as "Lewy Disease" since they don't call Alzheimer's Plaques Disease. I decided to start doing that after reading an article in O magazine by a journalist about a colleague who encountered and died from it as well, and she clearly was confused by the 'bodies' part of the term, or maybe I am mistaken; I understand that Dr Lewy and Dr Alzheimer were fellow researchers and discovered similar yet different things -- the 'bodies' was a term to describe the anomaly on the neuron.  But people presume it has to do with the person's body, since it is a movement disorder in that it's essentially like Parkinsons with a specific type of dementia which affects people differently than Alzheimers or vascular dementia, etc.  

I realized in early 2011 that my having so much experience related to older people and parents was that it basically put me through training to be a better 'coach' for others.  As it happened, my parents were older when I was born -- 36 and 39 for my mother and father, respectively.  I've had the diversity with their lives ending in totally opposite ways; my mother's was sudden and unexpected -- unattended for that matter, which leads to a police investigation to be sure it's not a murder or suicide (and staggeringly invasive feeling from that perspective). 

My father's increased needs started immediately following that, which initially we attributed to shock, grief, eating differently and now in retrospect I can see that he had a progressive neurological condition tracing back perhaps most of those 24 years and potentially beyond that. It leads to the question 'when does a disease process start?'.  Their 60th wedding anniversary would have been a couple of weeks ago; her death was in early March with her funeral on a Tuesday essentially 24 years ago, as I am writing this the first week of March 2011.

I feel my family was fortunate overall to have 20 years between 'big events' to recover and adjust; on the other hand it made for a long number of years giving assistance to parents -- essentially my whole 'young adulthood' and well into 'middle age'.  However, one of my 'framily' was dealing with a difficult issue with her husband's baffling and failing health and independence coinciding with a parent was reaching the end of life. It made for a VERY challenging winter and I certainly hope this spring brings brighter and easier days.

Having experienced it both ways, what is the hardest part related to aging or medical impairment has to do with the changing dynamics within the family system related to the decisions about driving, living locations and strategies, who is doing what to help, and then all the details which can include learning about the various needs for supplemental oxygen, bathroom equipment, walkers, wheelchairs, ramps, grab bars, and even disposable undergarments. 

I am wishing APA the same benefit to the wheelchair, cushion and mattress realm of consumers as their 'neighbor' up the interstate in Denver, The Youcan Toocan Store has done for people in the US related to ALL the other things a person might need to stay independent and safe in their home or assisted living (they carry walkers and companion or transport wheelchairs and then leave off at that point. They even carry a calling / button device for if there is an emergency which does not have the expense and hands-on service as those charging a monthly fee, such as the famous 'Help I've Fallen' company whose ads have made us all aware of the need for such a tool; as with everything there are positives and negatives to weigh).

I do feel I have a lot of information to incorporate now through Lumigrate which will help people whether you've only just now found Lumigrate.com or have known me most of my life and are receiving this from my having blocked, copied and pasted and emailed it to you.   My best to you all, and that includes my 'experts' who contribute to the 'fund of knowledge' for others of us to draw upon.  We're all in this together! ~~ Mardy