When do you step in?

The three children have been having on-going discussions about the right for our parents to make their own decisions versus the help we would be able to give, if they were not so far away from all of us.  Dad has voiced that he believes in the "we take care of our own" philosophy.  Which would be great if there was a great support network in place for them where they are.  There isn't.  No family close by and I've seen it a million times, friends are well-meaning, but they have things happen in their own lives they have to take care of.  So for now, all three of us are resigned to not pushing them to move and trying to be as supportive as possible from far away.

But then you have a conversation like I did today.  Ironically, I was having Mom look for the Aricept I knew Dad told me last week the doctor had prescribed for her.  Dad was napping when the discussion first began or I would have asked him.  So she couldn't find it.  Dad woke up from his nap and got frustrated because she was looking in the wrong place.  Seems that for the first week, he has to halve the pills, so he has them in another place with the pill splitter.  Between her poor vision and poor memory, she really didn't have much of a chance to find it.  And so he yells.  To be honest, they were both yellers when we were kids.  And he has never been known for patience with people, with machines, yes, people, no.  During our discussion last week, it is pretty evident he is still very much in denial about what is going on.  So between not accepting and not understanding what is going on, coupled with his personality characteristics, as time and the disease go on, this is not going to be good.  She can't help the fact she is having trouble with her memory.  And her vision has always been poor, now in addition she has processing problems.

So I don't have any answers.  I just know I am going to have to stay tuned in and try to catch it before it gets bad.  I'm enjoying not being on the bad list right now.  No-one even remembers I was talking about memory problems before the stroke.  Everything is being blamed on the stroke now and I'm fine with that.  But I have to prepare myself that I will have to become unpopular again.  Just knowing Dad's personality, he will lose patience and frequently.  And she will not understand and that won't be any kind of quality of life.  So I guess I will live the one day at a time philosophy.  I'll enjoy not being on the bad list for now, knowing I will have to be put back on it at some point in the future.

Sibling solidarity

Finally, the last hold out of the siblings has come to the realization that there is a serious problem.  It is amazing how much clearer you see things when you are face to face than when you talk on the phone or hear through others.  After a face to face visit last weekend, my baby brother realizes there is a serious problem and is on board to do something about it.

As I've said before, I would be happy to be wrong about this.  But since we all agree, and the psychiatrist agrees there is a problem, at least we all need to get on board and do something about it.  I am so thankful that all three of us are in agreement.  I see so often, working in assisted living, that children frequently prefer to stay in ignorance rather than face facts.  And of course there are the children that are totally self-centered and even if they recognized a problem, would not help with it.  It makes you wonder as a parent, is there something I can do to ensure my children will stay together and work together?  I guess only time will tell.

In my life in general and especially in this situation, I am trying to focus on being thankful for the positives and not so much dwell on the negative.  I am certainly thankful for the support and solidarity of my brothers.  I know from experience this will be a long process and require a lot from all of us over the years.  I'm just thankful we will be able to share the burden.

Snoezelen in practice

I experienced first hand this week the concept behind the Snoezelen therapy concept.  According to Wikepedia:

"Snoezelen (pronounced /ˈsnuzələ(n)/) or controlled multisensory environment (MSE) is a therapy for people with autism ordevelopmental disabilities. It consists of placing the person in a soothing and stimulating environment, the "Snoezelen room". These rooms are specially designed to deliver stimuli to various senses, using lighting effects, color, sounds, music, scents, etc. The combination of different materials on a wall may be explored using tactile senses, and the floor may be adjusted to stimulate the sense of balance.

Originally developed in the Netherlands in the 1970s, Snoezelen rooms have been established in institutions all over the world and are especially common in Germany, where more than 1200 exist.

The term "snoezelen" is a neologism formed from the Dutch "snuffelen" (to seek out, to explore) and "doezelen" (to doze, to snooze). "Snoezelen" is a registered trademark of the English company Rompa.^[1]

Ideally, Snoezelen therapy is a non-directive therapy^[clarify] and can be staged to provide a multi-sensory experience or single sensory focus, simply by adapting the lighting, atmosphere, sounds, and textures to the specific needs of the client at the time of use. There is no formal focus on therapeutic outcome - the focus is to assist users to gain the maximum pleasure from the activity in which they and the enabler are involved. An advantage of Snoezelen therapy is that it does not rely on verbal communication and may be beneficial for people with profound autism, as it may provide stimulation for those who would otherwise be almost impossible to reach.

Snoezelen therapy is used for people with autism and other developmental disabilities, dementia, brain injury and even toddlers. However, research on the benefits of treatment is scarce, based on variable clinical study designs.^[2][3]"

I got a new body wash with the Sweet Pea/ violet scent.  I was amazed that as I started to wash and smelled the scent, I was reminded of a doll I had as a kid.  There were these tiny little plastic dolls that had scent in them and I remembered distinctly the doll, where we were living when I had the doll, what my bedroom looked like, how it felt to hold the doll.  It was pretty amazing because I probably could not have called up that memory without the scent.  

There is so much we don't know about the brain and how various forms of dementia really affect it.  Just yesterday my boss, who has tons of experience in long term care and caring for individuals with dementia, commented about how her own mother at times seems so clear.  When I talk with staff I try to remind them that we don't really know how much someone is processing of what we say and do.  They may not be able to respond in a way that we can understand, but it doesn't mean they don't understand somewhere inside.  How exciting that so many new ideas of therapy and creating therapeutic environments are coming into use.  I may not get to use them to help my mother, but I hope I can use them for the benefits of others.

Examples of True Love

I have been amazed this week at the examples of what love really means.  I've had the opportunity to talk with several husbands that are caring for their wives with dementia.  I guess it is a cultural thing, but it doesn't seem unusual for the wife to be caring for the husband.  After all, women are natural care-givers.  But I have been amazed at what these husbands are doing and have done for their wives.

My first experience of what can happen when someone is diagnosed with a chronic, progressive illness happened at my first professional job in the nursing home.  There was a lady there who was in her 50's and had been diagnosed with MS.  She used an electric wheel chair and got around the nursing home, although she needed assistance with everything.  Her mind was still very much intact.  Her husband had left her when her illness began to progress and she needed more help.  The same thing happened with my cousin who has MS.  Her husband left her as she became weaker.  So I guess I had come to expect that although women stay around to care for their spouses, men do not.  I love to be proven wrong.  I met a really wonderful gentleman who is caring for his wife who has early onset dementia.  Not only is he not contemplating giving up, but he sought out the Caregiver Support Group because he wants to do the best job he can.

I don't know why I am surprised, I know my own father would not skip out.  But then like most daddy's girls, I think my father is one in a million.  It seems in our culture men are judged by how strong they are.  So here is a toast to the men who are strong enough to stick with it, to take up roles they never had before and work outside the home and take care of the house, who pray for and practice patience with their spouse's illness, who should be recognized as heroes.  You are heroes in my book and I know in your family's eyes as well.