The Realities of the State of Alaska's View on Dementia

As background, those of you who have read my blog regularly know that recently I have been talking through my experiences as I take steps toward placing mom into an assisted living home.  One of the realities of that step is that you may have your elder in a home on a trial period and if it does not work out, they must go to a different facility or return home.  To that end, I have not given up seeing what is the most I can get for in-home support for Mom.

For those of you who live elsewhere in the U.S. or Europe, it may come as a surprise to you that Senior Disability Services (SDS) in the State of Alaska, does not consider Dementia worthy of assessment when considering senior aid and services.  I have spoken with several groups that serve seniors and they all say the same thing; they have advocated that a separate assessment tool be devised that targets senior with any of the several forms of dementia.  The State had no response for some time, but has recently begun to look into it.  However, things do not typically move fast up here ... well, what bureaucracy is fast moving, for that matter.

But, let me lay out what this means for the dementia patient vs. a person with physical handicaps.

When my mother was evaluated for services the focus was entirely on what she could manage physically.  Some of the evaluation criteria are:

• Need for external medications or therapy that she can not self-administer
• Personal hygiene as a prevention to disease
• Capability of self-administering medications
• Transfers (i.e., mobility) between one location and another
• Capability of feeding herself
• Capability of dressing herself

Of these my mother qualified for three, which was sufficient to receive aid from the State given her income.  She qualified for those three by virtue of the fact that she would not remember to manage those aspects of life, but luckily it comes down to the same thing - in this case - as not being able to physically manage those things.  She must have oxygen for the rest of her life, but is unable to turn the device on and off and frequently removes it.  She is no longer capable of cleaning herself after using the toilet.  She can not administer her few medications.  We are lucky because she only has four medications, but she forgets them altogether now.  At an earlier stage in her dementia, she took several osteoporosis capsules in one day - hence the need for someone else to ensure dosage is correct.

Now let's address the criteria which mom did not meet in her first assessment.  Mom can still walk, although it is becoming increasingly difficult for her to support her self, lower herself into chairs and get herself out of chairs.  It is harder for her to get in and out of bed and I will frequently find her asleep with her legs dangling over the bed because it hurts or is too hard for her to lift them onto the bed.  But she can still move.  She is capable of moving her body so she can get dressed and she can feed herself.  She has recently qualified for a small increase in Personal Care Assistance due to the fact that she is showing more difficulty with mobility.

Now here is the fact - Mom would not dress herself if no one came in and got her clothes out and either helped her dress or verbally guided her in dressing.  This is related to dementia, not to anything physical.  My mother can feed herself, but she can not cook anything.  She remembers that food was once in the freezer.  She will take the food out and put it in the microwave.  She will not turn on the microwave and she usually will forget it is there.  Occasionally she has tried to eat it still frozen.  This is not a physical problem, though.  If the food is in front of her, she will eat - at least she usually will.

My mother does not respond to the telephone ringing with consistency any more.  If the fire alarm went off, she would not know what to do.  If the temperature dropped, she would not know how to keep herself warm or get help if there was no one else in the building.  If we did not supply food and make sure someone sits with her, in many cases she would not eat.  Without constant encouragement, she does not drink enough to stay hydrated, which affects her health and her mental acuity.  And she is tiring.  Being at FRA all day is wearing her out.

So while my mother still is physically well in most regards, she is largely unable to benefit from that physical well-being.  She must be guided through her life and supported in her activities in order to still have any enrichment at all.  Please tell me how this is not as serious as a person who can not get out of their wheel chair?

I will post more on this topic tomorrow.  As I said, I am exploring all avenues since I will place my mother as a trial in an assisted living home soon, but I must be sure I can care for her at home if this choice is not workable for her or the facility.