Glad I'm not God

It's been a tough week at work.  One of the residents that is in the middle to late stages of dementia fell and broke her hip.  Broken hips are usually bad news.  Elderly folks break a hip and frequently don't regain their previous level of functioning.  Elderly people with dementia who go under anesthesia really don't fare well.  So when I go to pray for this resident, what do you pray for?  I'm so glad I'm not God.  I can't possibly imagine what the best outcome is for this resident and her family.  I would prefer to do what I feel I'm called to do in my own little corner of the world.  I just hope what I do does make a difference.

Smattering of topics

We just got back after a flying trip back to see family and another short vacation.  Mom has been on Aricept now for about a month and I can tell a subtle difference.  Even she says she can tell a difference, although she believes she is recovering from the stroke.  She still forgets things about 5 minutes after they happen, but it is a subtle personality change that I could see.  I don't know how to explain it other than her personality doesn't seem so shallow now.  That could be because the last time we saw them, in November, her obsession with her cats was almost constant.  Now she was able to carry on a conversation for quite some time without talking about or looking for the cats.  She still has periods where she gets focused on where the cats are and asks Dad repeatedly to go look for them, even though they were located within the last 10 minutes.  He gets frustrated and ends up by yelling.  I know he ends up feeling like the husbands that attend my Caregiver Support group, he gets frustrated, explodes, then feels guilty.  I think I'm going to create a spreadsheet for them where every hour he can write down where he last saw the cats.  Then maybe if she sees it in writing, it will calm her until the next hour.

The exercises that she is supposed to be doing following the stroke are an issue as well.  She thinks she is doing them.  He reported that the week before she did not do them for 4 days out of the 7.  I've noticed one of the issues she has is that she will talk and talk about doing something but just can't seem to get the impetus to actually do it.  For instance, I gave her oil paints for Christmas.  She says she has been too busy to use them.  I guess she is busy looking for the cats most likely.  I have a new resident that is going to move in that is in the same point.  He has great daughters who want to support him but not take over.  I was telling one of the daughters the other day that they are going to have to give him a nudge because he just can't do the planning and follow through required on his own.

Speaking of families, this week has been tough because I have a resident whose dementia seems to be progressing after doing really well for several years.  I look at one of her children in particular and I can see the pain of watching his mother become someone he doesn't even know and his losing the mother he did know.  I actually said out loud to myself the other day, "maybe Mom will have a big stroke and it will be all over before it progresses to that point".  That is very unlike me.  I have prayed for years for God to give my parents health and long life.  I don't feel ready to be the foundation generation yet.  But maybe losing her quickly would be easier on us all that losing her slowly.

So after a short break, I'm back, asking God to help me help residents and their families and to give me the wisdom to know what to do with my own family and the strength to do it.

Avoiding hospitalization

The latest edition of Care ADvantage, the magazine put out by the Alzheimer's Foundation of America, had an article about trying to prevent hospitalizations for individuals with Alzheimer's and how to make the best if someone does go to the hospital.  I saw first hand this week another aspect of what happens when someone with dementia goes to the hospital.

One of the residents at the assisted living went to the hospital about a month ago.  It was not a preventable situation.  While in the hospital, she did not get up and walk.  So after addressing the issue that sent her to the hospital, she needed a rehab stay at a skilled nursing facility because she had lost so much strength and ability to walk on her own.  So off she goes for the famous 21 day stay at rehab.  I understand why it happens, yet that doesn't make it any easier to watch.  While at both the hospital and rehab, she was restricted from walking except when there was a staff member to walk with her.  Because of her dementia, she was not one to use the nurse call system when she needed to go to the bathroom.  So if she didn't call, they didn't walk her to the bathroom.  She walked during the physical therapy sessions, but that was about it.    And I firmly believe the old saying, if you don't use it, you lose it.  And she did.

The staff at the skilled nursing facility told the family that her inability to walk now (when she was slow, but able before going to the hospital and the reason for the hospitalization had nothing to do with her walking) and the fact she was not feeding herself was because the dementia had advanced.  Now I can't see into her brain so I can't say it wasn't.  I just think it was more a function of how the system is set up that isn't beneficial for people with dementia.  First of all, I don't like to just write a decline off to dementia progressing.  I think that can be an easy explanation for people to fall back on.  Secondly, I have worked in a skilled nursing facility and I know with the pace there, it can be much more efficient to just do things for a resident, feed them, wheel the wheel chair to the bathroom, or just change pads if they don't make it to the bathroom.  And I'm not against facility care.  I know there is a need for it and I know there are lots of facilities out there that are really trying to do the best job they can.

So when I went to evaluate her for coming back to assisted living, she was not in any shape to come back.  We are lucky in assisted living because even though we see our residents decline and need a higher level of care, we don't watch them deteriorate to the extent I did when I worked in a skilled facility.  That doesn't mean it isn't hard to see.  Not only was it hard for me to watch while she ate when fed, but not on her own, but I could see the future for my own mother as well.  It used to be when I first started in long term care, I accepted people where they were at the time and it was okay.  I hadn't known them in the younger days as young wives and husbands, parents, grandparents.  All I knew was how they presented at that time.  Now as a family member myself, I understand how hard it is to watch the person you once knew disappear.  And just as hard is the saying good bye to the family member that has become a part of your family as well.  Giving the daughter a hug, her looking you in the eye and you both know this move out of the assisted living is the beginning of the end.

I do love my job and I love being able to help residents and family members.  And I guess if I really didn't care, then it wouldn't be so hard to watch a resident decline or have to say good bye to a family member.  I just pray this experience helps me to be a better person, to be a better care-giver, to help families more and to be better at caring for my own mother.

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.