Medicaid Waiver Assessment and Reassessment

A year ago we completed Mom's first assessment wherein she qualified for the Alaska Medicaid Waiver program.  These criteria are based on state interpretation of the what constitutes acceptable entry into the program.  Most certainly income is one of those items.  But the overriding criteria is based on ability to care for oneself in important ways.

Last year Mom was still using oxygen, she could no longer complete her own hygiene unassisted and she needed others to manage her medications.  That was sufficient to qualify her.  This year, for whatever reason, she is not showing signs of needing oxygen and the 24 hour monitoring that goes with it.  However, her care has increased anyway.  She is not able to find the dining room at all times without direction.  She is not able to dress herself without assistance.  She can not reliably find her way back to her room without assistance.

Apparently there is a numbering system which indicates degree of dependency on others.  Mom's numbers increased in all of those areas that I mentioned and the evaluating nurse said she likely would be renewed.  I certainly hope so.  I dropped her trust fund when she entered Anchorage Pioneer Home to simplify our finances and have not sheltered her money to keep her income below acceptable levels for even Medicaid.  I could re-instate it, but at the very least, it would mean Mom would need to return home and would have less hours available in her plan of care than before.  We would not be able to take care of her without my staying at home to be with her.

These things become very serious at junctures like this.  I am the primary bread winner for my family and both of us need to work to maintain our home through the winter months.  I will know in a week.

Grandma Gets a Visit

Teresa stopped in Anchorage on her way back from a USDA trip down to Portland, OR.  She picked her up around 3 PM, had the opportunity to see her living area, meet the cat who befriends all those who love cats, and then took her to coffee at New Sagaya just a few blocks down.

She said Mom didn't recognize her at first until she got closer.  Then she was so, so happy to see her. She commented on how protective Jonni, Mom's over-protective roommate, is and how things she said made no sense at all.  I experienced that with Jonni at first as well, but she spoke very clearly the last time I visited, so I guess it comes and goes.  The over-protective, where-are-you-taking-her and you-can't-do-that persona does not come and go, however!

Teresa said Mom wore the beads she gave her when she left Fairbanks to move.  Teresa asked if she looked at the mountains from her bedroom window and Mom said she did and that she watched the planes/plains (?).  I wondered if she was remembering when she first moved into the assisted living home in Boulder, before she was well enough to move to her own apartment after Poppy died.  Her little room faced the "plains" and from there she could see the "planes" take off and land at DIA.  But then, she made a big deal about watching planes here in Fairbanks every day, so maybe she really does notice any plane that flies in and out of Lake Hood, ANC, or Merrill Field.  

Teresa asked if she liked living there and she told her that she did.  I am surprised at that because she always complained to us about Fairbanks Resource Agency (FRA).  I wonder if it was because she was more tired, having to go out every day and for such a long period of time.  It was true that she complained less about FRA when she didn't have to rush in the morning, when Marilyn started taking care of her and when Marilyn picked her up sooner in the afternoon.

Winter seems like such a long time ago.  it seems so long ago that she lived here now, but it's only been six weeks.  I guess the change in sunlight and temperature here in the Interior accentuate the time difference or maybe my emotions have traveled so far in that intervening time.

I also spoke briefly with one of the nurses at Anchorage Pioneer Home today when I called about some aspects of Mom's care.  She told me Mom was cute.  She said she would walk and walk and walk (with her walker).  Then she'd sit for a while and then they'd find her up walking again.  She seems to really like having all the space to move around in and the support of the walker.

Things Going Better Than I Hoped

When I call Pioneer Home in Anchorage, it appears that things are going well for Mom.  Each time they tell me that she is sweet, easy to care for, and alert.  They have her using a walker so when her dementia advances beyond a certain point (where she can't learn anything new), she will already be used to using it.  They told me it will give her more freedom as things progress and she will not need to go to a wheel chair as quickly.

She has a lovely room now, one that looks out toward Delaney Park and every time I call, she sounds upbeat and chipper.  She did have an incident when her oxygen saturation in her blood dropped to 82.  She is prescribed to receive oxygen any time it drops below 88.  She is going in next week for Pulmonary Function Tests, which test the tidal volume, vital capacity, inspiratory capacity, expiratory reserve.  She has failed these tests in the past, necessitating oxygen supplementation 24 x 7.  I am very interested to see what comes of her tests.

They consider her frail, but she eats well and sleeps well.  They say she tires after walking all morning, but she definitely uses the walker to its maximum and prefers to walk over sitting for long periods.  Her care coordinator now has what she needs to set her up for Hearts and Hands, a program she can attend two to three times a week to get outside the building and also participate in a broader range of activities than what are offered at her home.

I don't know when I can see her again.  Since Gary canceled his surgery, plans to go in April are gone.  It is likely we will be through Anchorage in May when Dad is here, at least.

Gradually Sorting Through Mom's things

Although it was hard for me to start going through Mom's things now that she no longer lives downstairs, Today was fun, actually.  

I cleaned out three drawers by her bed.  In the first drawer I found many greeting cards.  Mom would get the pleas for donations in the mail and apparently many of the pleas provided greeting cards.  And just as apparently, the greeting cards were all identical when they sent them out.  So I was able to find envelopes for many sympathy cards, many get well cards, a few anniversary cards and birthday cards (I think she was able to use those up) and one congratulations on your baby card.  The sympathy cards were the ones that were not in great demand apparently.  She either donated a lot through a few years or accumulated the same ones over several years.   It's kind of funny if you think about it.  A sympathy card is not something I would think to keep on hand, let alone several of them.

Then I found a variety of Christmas cards and only a few of them had matching envelopes and finally I found several matching envelopes that did not fit any of the cards.  I sorted them and decided to donate all but the thank you cards; I am just about the worst person I know for sending any type of card, but I figure it will give me an incentive to at least send a thank you note.

I found a few of the blank note cards the kids and I gave her for gifts when she was still able to write letters.  Then I came across a manilla envelope.   On the outside of it was written, "Things I want to keep."  Inside it were more cards and envelopes (same type) and one startling find.  There were several photos of her cousin Ed Coburn.  She wrote to him all through WWII and they remained in contact through their lives.  When he could no longer write, his wife did it for him.  She sent Mom a photo of Ed in his casket!  No joke .. on the back was the comment that Ed made her promise several times she'd bury him in overalls, not a suit.  Indeed, he was in overalls.  She also included a very nice photo of him, his son and grandson while living and a few more informal ones.  I kept two of those.  I did not keep the photo of him in his burial casket!  I never knew Ed and didn't even know Mom wrote to him regularly until she moved downstairs, but he meant a lot to her and for some reason I felt very sentimental about the longevity of their relationship and I don't want to lose it.  

Then, needless to say, there were many photos of family. I took kept those of people I remembered or who were identified on the back.  I also found something very special.  There was a very small newspaper clipping about my Uncle Jerry.

" Jerry R. Power, radioman first class in the Unites States Navy and a son of Joseph B. Power of Fresno, is serving aboard the non-magnetic ocean - going minesweeper USS Reaper, which has reported to the US Seventh Fleet in the the Western Pacific."

I am keeping it, of course.  We all were so proud of him and his career, but I don't know if this was a notice in the San Diego papers or one that Grandma clipped from Fresno.  Grandma was much better at keeping all of these things and I have her photo albums (one of the things I made sure stayed put).

Before Mom moved, I had begun to move things of importance out of Mom's apartment as her dementia progressed because things were disappearing.  I'd given her a very lovely cross from New Mexico, for example, that she wore for a long time and then one day it disappeared.  I gave her a second one and that disappeared also.  That reminds me of something I noticed about Mom and keeping objects of worth .. she just never really managed to do that.

My Mom has lost or had stolen most everything of value that she has ever had.  

Mom's story about losing objects is odd.  She had a trunk full of her most special items - the cuckoo clock that Uncle Ray sent from Germany, the cocoa set he sent from the same place, her crystal from their wedding .. things like that.  She shipped it from San Diego to San Dimas; Uncle Bob was working for Santa Fe at that time and it was sitting on the Santa Fe loading dock when it disappeared.  At some point, she gave her cedar chest, again from her marriage, to Grandma for safe keeping.  In it were things people had given her like her linen and one very special crocheted table cloth.  As log as Grandma was alive, he remained secure.  After Grandma died, instead of shipping it home, she decided that was too expensive and left it in the apartment with instructions for Uncle Ray to hold on to it for her.  She never saw it again.  It's one of those things, I guess that would have come to me eventually, and then to my daughter - but there it is.

At the same time, she did bring home some of Grandma's things, among them several really wonderful pieces of jewelry.  I don't think they were expensive - Grandma's didn't necessary seek out expensive things, but her choices for jewelry were always distinct, uncommon, and conveyed an eye for craftsmanship.  I always loved the things she had because they were good to hold and look at.  I don't wear much jewelry, so it was always an appreciation of her unusual, but very stylish taste.  When Poppy died, and Mom was really not herself, I took those things to my house and kept them for some time.  Then she settled out and I returned them to her so she could enjoy them.  When we moved her from Boulder to her apartment in Evergreen, she still had them.

When she moved here, many things did not arrive.  She had given a key to her neighbor, because they were "friends" and they looked out after each other.  After Mom packed up her things, they remained in the apartment for nearly a month while we prepared moving all of our things from Colorado here.  When we unpacked, she did not have the bed I'd bought her right after Poppy died, but some truly horrible mismatched box springs and mattress.  She no longer had her bedspread, which wasn't an antique, but a colorful patchwork design with great yellows and she liked it.  And many pieces of her jewelry and Grandma's jewelry were missing.  There were other things, but these are the items she grieved after.

Then what she had here began to disappear, which is when I secreted items away for safe keeping.  What I do still have a lot of is clothes .. and I gave bags and bags of them away when I realized she'd kept all of the larger sizes she wore right after she quit smoking, but I still have a full closet of things I didn't take to Anchorage.

It's interesting that I don't miss having any of the items she has lost along the way.  The time we spent together over the last several years is more important to me.  I got a call today from Anchorage Pioneer Home about medical appointments we have coming up next week and again they told me how she was really one of their nicest residents and they truly liked having her there.  That means so much to me to hear - that she is appreciated for the wonderful lady she is.

My Heart is Heavy

We moved Mom to Anchorage this weekend.  She is adjusting well, but still wanted to come home at one point.  I am not adjusting as well.  I can't think of it too much because I cry.  The types of questions I am being asked are exactly the type of thing I don't want to think about .. what to do if a change in health occurs; what are her wishes; what are my wishes; where I get forms to file with the facility.

Then there are the other items - like putting her on a walker now so she doesn't have to progress to a wheel chair when she weakens and how they assess her overall health on a daily basis.  A long discussion ensued on how to assess her need for oxygen since her OCT tests are now posting terrible results - and never have.  Should we do an exam with a pulmonary specialist?

Finally, things like general cognition, attitude, preferences .. on and on.  I felt I was repeating myself again and again as a new staff member came on board.  They do communicate as a group, however, as suddenly everything shifted around a request I made to have a video conference with her daily.  We will visit daily for the first week, and then move to three times a week for the next few weeks, and then once a week.

I did make the right choice in so far as physical care is concerned.  She will receive 24 hour, professional care.  The facility is well-organized, but personable, which is why I was asked to repeat my story several times.  They could glean items from me I may have forgotten with one or another.  Her room is nice, really.  It is institutional, but we were able to make it homey and comfortable and individual.  I took her up to the top floor dining room and she had coffee and we sat and looked out over the city and inlet.  It was cloudy to the east, so she didn't see the mountains so close to the city itself, but she still enjoyed it.

But it was after that visit that she didn't want me to leave and wanted to pack up a few things and go home.

I cried when I left.  She is my mom and I won't see her much any more.  It's hard.

Oops - What Am I Forgetting?

I have been way too relaxed about getting Mom's things packed.  I've also been very random about it.  I have a theory, which I put to test every time I should be organized - if I randomly do tasks needed to get the job done, I will get it done faster.  Addendum 1:  When I don't get it done faster, I only do the things I really need to do.

So - things I really needed to do:

Fill out Registration Forms for Providence Senior Care Center and Gather Medications
Mom is required to have a doctor in Anchorage, so we made an appointment to visit with Dr. Farzin before taking her to Anchorage Pioneer Home on Thursday.  I forgot to pick up the paper work .. actually, I don't remember seeing it in our mail.  I also haven't seen Mom's March Medicaid stickers, so maybe it wasn't entirely my fault - but they had to fax it to me.  Then I discovered the printer connected to the fax number I gave to them was totally and completely out of order.  I provided a second one in our building today.

When I sat down to fill out the paper work, I put my name on it instead of my mother's.  I couldn't reprint the forms and we don't have any type of whitening cover up, so I cut out pieces of white paper which I attached to the forms and then wrote over.  The medical history itemizations were detailed - two columns running down the full page.  Each column had condition, year, Yes/No, so you had to do something for each possible malady. I managed to answer one condition and then read the following condition and put its response in the row above - twice - on the same row in two different columns.  I couldn't use my cover up trick for that mistake and simply crossed out the wrong entry, and then wrote it in the row below.

I did remember to ask the clinic in Anchorage to test her oxygen level.  Her levels were very high on Saturday and I think it must be because she is getting enough oxygen now that the Apria delivery man corrected the issue with her concentrator.  But, in any case, it was too high for them to prescribe oxygen through Medicare.  This borders on being funny in that she has needed oxygen since 1999 and gets addled and/or start coughing without it.  But the good news is, I don't have to take the portable oxygen tank with us on the plane.

I also need to take her current medications, of which there are only 5 and 2 of those are not used daily.  I need to present them to the clinic in the prescription bottles, so I placed her weekly allotment in her pill dispenser and then placed her medication bottles in a plastic bag for TSA.

Sew-in Name Tags on Mom's clothes for Laundry
Anchorage Pioneer Home doesn't have a packet of do-this-and-don't-bother-to-do-that, so I have found out about things as it occurred to me to ask.  Do I need to take sheets?  No.  Do I need to provide shampoo, soap, and other personal items? Yes.  Do I need to provide towels; how about hangers?  Do I pay for laundry? No.

We don't have time to get real name tags, so I will write her name on ribbon and then sew only the ends to her clothes.  What do I do about socks and bras?  I have not started this part of the preparation.  I have visions of Teresa, my daughter, and I working feverishly on it tomorrow night and then, when we don't finish, my doing the same the entire time I am in Anchorage.

Packing Mom's Clothes, Toiletries, and Family Photos, and First Doll
I have started that, although I forgot what I packed in one suitcase.  I packed some nice clothes that Mom could wear when she got there the next day, if I didn't get other things unpacked.  So today, I did the same thing with a different small, carry-on suitcase.  Then I wondered what happened to a particular pair of pants and thought to look in the first suitcase.  Should I take carry on both or just one?

One is probably enough.  I need to get all of the rest of the clothes packed in a suitcase or box so Gary can take them in the truck. Except for the name tag issue, this is actually almost done.  See?  Being random is okay sometimes.

I am holding off on packing her toiletries until after she has a shower tomorrow night.  Teresa and I will do her photos all at once.  Oooo - I need a box for those photos; I need to check the garage for a box or stop and get one at a liquor store or something.  I feel sad taking down the photos she has on her wall, but I will only take down the 3 that she still recognizes who is in the photo.

Load Furniture into The Ridgeline
We are taking down her rocking chair, her dresser (which I emptied out), her tall corner bookcase (which I cleared of videos and computer hardware), a lamp, and a walker.  She doesn't use the walker at home or at FRA, but she often looks like she would like something to lean upon while walking.  I figure we might as well include it.

Check in Ahead of Time and Oh YEAH -
She needs an ID for TSA.  I never bothered to get Mom an ID when she moved here.  She wasn't driving anymore.  I did order her marriage certificate.  She had her birth certificate, but in order to issue an ID without a passport, the State of Alaska requires a birth certificate and a marriage license to verify the name change and pieces of information indicating her address.  I have all that, which is a dang good thing because Mom and I are going over to the Department of Motor Vehicles tomorrow and getting a photo ID.

Other Important Papers
I am taking documentation for my status as POA and Medical POA.  I think Providence Senior Care Center will want those on file.  I am also taking copies of her Medicaid number and Medicare card along with her prescription drug supplement company.  I am taking her burial arrangements, for Pioneer Home to copy ... I think that probably covers it.  I sure hope so because we leave for Anchorage is less than 36 hours.

Anchorage Pioneer Home

I visited Anchorage Pioneer Home yesterday.  I was given a general tour of the entire facility, and also given a more in-depth tour of the Level III facility.  The residence areas for Level I and Level II are wonderful.   There are many lovely areas to sit, gather with friends, have activities all in addition to the privacy of each individual room.  Level III is a converted nursing home and has that hospital feel to it, but they are slowly changing it so it is more home like.

Two aspects of the Stage I, Level III living area that I did not find entirely comfortable were the set up of the semi-private rooms and the arrangement of furniture in the TV/common area.

The semi-private rooms are used just as they were in the nursing home.  They are not huge rooms, but they are bigger than any of those I saw in assisted living homes in Fairbanks and allow for more privacy and individuality.  The rooms do afford clear distinctions between living areas for the two that share the space.  All residents start out in the semi-private rooms. They are moved to a private room as they become available.  I have no idea how long it would be before she moves to a private room, but I know that the hardest thing for her besides not having her cat will be the lack of privacy.

But, whether they have a private room or not is probably not so important; they are brought into the common room for most of the day so they have social interaction and activities.  There were chairs here and there throughout the area and then one very nice collection of couches and chairs facing a gas fireplace in the center.  But beyond that was a large area where activities are held, along with TV watching.  All around the edges of the room were recliner chairs.  I have noticed this in other facilities for elders.  Instead of putting chairs so people can look at each other closely, they are lined up against the outside wall of a room.  This made no sense to me, but since I have seen it several times now, I know it must be used because it suits that stage of aging.

Yet, it makes me uncomfortable.  All the chairs are the same color, sky blue.  All covered in the same velour fabric.  All face the center of the room, a large area; all are recliners.  When I was there, every one of them was filled.  Sadly, one woman saw the social worker and called her over, clinging to her.  She said, "You are the one who will help me go back home, right?"  I suspect Mom will have no such illusions about returning.  Inside her is a place that is very aware of reality.  Combine that with a flight by airplane to a totally different city and she will be clear that this is not a normal excursion from which she will return.

This makes me all very sad to talk about.  You can not imagine the hurt I feel that she will be so far away.  I have reconsidered the home in North Pole several times, and each time I find myself thinking it is not right for her, but I am not sure why I think that.  Despite the size and lingering hospital feel of the Pioneer Home in Anchorage, I feel certain she will receive the kind of care she needs. 

The staff ratio was probably 5 to 1, which is not bad.  I saw staff every where and every place, all the time. All residents were clean, well-dressed, and many alert and smiling.  She told me that they do not have enough room on the second floor, Stage II, Level III, so some residents are no longer suitable for the floor into which my Mom will move, but must stay there.  I suspect some of those I saw sleeping with blankets for the entire time I was there were among those residents. 

I do not think many of those seating in the chairs were capable of getting up and moving around the facility on their own.  I think once placed in a chair, they would stay there until moved to a new spot.  I wondered if the insistence on them being in the common room was because they had to be sure all members of the facility were visible and attended to.  This would mean that my mother would never have the kind of privacy she has needed up until now.

These are things to ask about.  I would like to speak with the head nurse tomorrow when we visit again.

Transitions Ahead

My previous post was written over a week ago and I did not publish it.  I wish I had the date on it because it would help frame what I am about to report more clearly.

My mother's caregiver has provided consistency, but she has become increasingly frustrated with Mom.  For whatever reason, Mom is refusing to do as she asks more often.  Pam and I had experienced it as well, but the frequency of her refusing Marilyn's help has increased.  She still does as I ask, so I have stepped in more often to care for her.  My only answer to Marilyn was that she had an appointment with a new Family Practitioner and I would discuss the changes we were seeing with her.

That day arrived, and Wednesday I took Mom in to meet Dr. Leitiskow - and just in a nick of time.  The day before, Mom had eaten breakfast and then gone back to bed; she had refused to take her medication, refused to get dressed, refused to let herself be cleaned.  Gary was at the dentist with the car, so my daughter gave me a ride home.  We walked in to find Mom standing facing the door, arms akimbo with a pose of "Well, where have you been?"  She was in good spirits.  I cleaned her, fed her, and then went upstairs to continue working, but I was rattled.

I wanted to hear it straight, but I don't think I was prepared to hear it as clearly and fully as it was delivered.  But Dr. Leitskow did not hold anything back; she wanted to be sure I was thinking through the situation clearly and looking into what was best for my mother 24-7.  Her refusal to cooperate was becoming a more serious issue.

She told me it did not matter if Mom suffered from vascular dementia or Alzheimer's disease.  The progression was very similar.  There would be a day when my mother would not recognize me.  She also told me that I needed to put in paper work for Denali Center, and tell the State of Alaska that I would be willing to place Mom in any available space.  If the space opened up in North Pole, well and good, but I could not wait for too many more opportunities to pass me by.

That lit a fire under me.  I drove over and got the paper work for Denali Center; I called Teri at Lilley Lodge who said she would call me back later or I should call her the next day.  There was an opening in her home now.  Then I called the State of Alaska.  There was a part of me that always thought about how I'd not taken the opportunity to move Mom to Anchorage when I was given a chance at it a couple of years ago.  I knew I wouldn't see her, but I felt it was when she would have made the adjustment most easily and it would become home.    Now I was opening myself to the possibility of her living in Sitka, Juneau or Ketchikan because it was safer for her and she would not be moved again.

Then an unexpected turn of events once again presented me with the opportunity for Mom to move to Anchorage Pioneer Home.  I really have no idea how it happened or why, but the state intake coordinator told me to call Anchorage immediately and to tell her Mom's application date was 11/4/2010.  I did.  The next thing I knew, I was going through a preliminary interview for a spot in Level 3 at the Anchorage Pioneer Home.  Once the preliminary interview was complete, I was cleared to interview with the admitting nurse.

I did that this morning and then waited for them to call me with the results of their evaluation.  In a short time I was called back with an offer for Mom to move in.  I accepted.  Right now we are set to move her at the end of this month - in 19 days.

I did talk to Teri to let her know I simply went with it.  I feel good about her going to the Pioneer Home.  In talking with my husband this morning, before the admitting nurse interview, his perspective was very clear.  He said there was little chance she would last long at Lilley Lodge.  It wasn't the home itself, but her state of continuing decline that made him think she would do better in a facility where they were prepared to have her live with them until she passes.  This is what I need to know.  I need to know that she is moving to her final home and not a stop along the way.

Interlude

We have reached a pleasant balance in our lives.

Marilyn cares for Mom morning and evening.  Her schedule with Mom is consistent.  Mom is calming and her routine is even.  She is not always angelic in her response to her or me, but more often she is accepting and comfortable.  I steeled myself for Mom being gone soon, but things are not working out that way and right now, I don't mind.

We are doing okay.

Seeking Help for the Weekends

Well, I set in motion a choice for Mom to move into assisted living, but since there is no certain date, I needed to think through how to manage until that time.  It is still very hard for me to consider Mom not being here.  I was out of town for two days and when I returned, Mom was grumpy when I first greeted.  When I went down again, Marilyn was getting her into bed.  She looked over at me smiling and raising her head to watch me.  She had that motherly look she gives me sometimes - you know the kind that says she is happy to see me because I am her daughter.

I realize I am avoiding going down to see her as much as possible so I don't feel any worse than I do.

At the same time, I put in an ad for help on the weekends.  If someone reliable comes in for mornings on the weekend, I will then be able to take care of her in the afternoon, but have my mornings free.  This is becoming increasingly important to me for my mental health.  Once I accepted that I was not able to work full time and handle Mom's care as well,  my state of mind has been more at ease.  That decision, at least, has not caused me any feeling of regret

I have had several responses to my ad.  I need to contact all people who have responded tomorrow and interview the most likely.  One candidate is a solid person, but not as experienced as others.  I liked her, but think she may be happier in a research environment.  I have had a few respond with CNA certification and some in school for the same.  In any case, if I can find someone reliable on the weekends, this will help us until Mom can move.

She looks more frail and worn each time I see her. 

A Decision

Suzy contacted me to let me know that Marion, at Let Us Care, had taken a private pay client.  She is a business woman after all.

Suzy had mentioned Lilley Lodge, the home in North Pole when she promised to check with Marion.  She mentioned it again today, so I called Teri.  She had just arranged to have the space she had available taken.  However, she does have a resident that she does not expect to be there much longer.  She was not sure when the space would be available, but was I willing to wait if Mom didn't need to be placed immediately.

I said that would be fine.

After three days of three messes I needed to clean up, I reached the point where I was willing to let go and let Mom move out.  I realize she doesn't want to leave her home. We don't really want it, but I am not equipped to care for her the way they are at Lilley Lodge.  They watch their clients as carefully as the caregivers at FRA do.   I was concerned about this because the messes Mom makes are chiefly due to not being watched closely enough to get her to the bathroom on time.  Teri told me they are constantly adjusting bath room breaks for their clients based on their needs.

I also remember that she has two people on staff for her 8 residents all of the time.  And they all eat together, and their rooms face the common room.  As it turns out, she can have a private room, so I think this will work out.  Teresa and I talked it over and we realized we would not be able to drive down after work because Mom is now going to bed so early.  But we could alternate driving down to North Pole on weekends to take Mom for Chinese food.  She really likes that restaurant because it reminds her of growing up in California. They would drive from Laton to Hanford for Chinese food (or Mexican food) once a week.

I think this could work out.

Nothing is Perfect

The problem is I keep trying the perfect situation for my Mom and it doesn't exist.

Hope Haven has good staff and good socialization, but limited ground floor space and requires a long walk to the common room.  The living  area in the apartment is not currently used and when Mom was not well, nor getting enough oxygen, this would have been a huge stumbling block for her.

Lilley Lodge has a nice feel to it, although very small.  Teri is very competent and the residents seem happy.  However, it requires sharing a room and is in North Pole - a long way for me to go on even a weekly basis and I won't see Mom as often as I'd like.

Let Us Care is a good set up with spacious rooms and all facing the dining area and common room.  It is close to campus so I could walk over to see Mom daily for a short while at least.  But from what I can tell, there is little social interaction among the residents.  They all eat and wake on their individual schedules instead of as a household.

Caring Bridges has good staffing and a lot of social interaction.  But it is crowded and Waiver recipients share a room.  Not having any privacy, they all end up flocking out into the main rooms.  I felt Mom would emotionally tire since she is a private person when home.

What I want is a home that has the layout and feel of Let Us Care with the socialization of Hope Haven and Lilley Lodge.  I want the staffing levels of Caring Bridges.  I want the care giving qualities of all four providers - so that is the consistent point between them.

What I want is my Mom to be herself instead of going into this headlong decline.  What I want is for her to stay home until she passes.  That is what I really want, but I am tiring.  I have a few hours of PCA and respite care for the weekend, but will not ask Marilyn to come those days as well.  Yet, the prospect of doing what we are doing for another year seems impossible to me.

This weekend, both days she had gotten up on her own and attempted to clean herself, but without success.  Both days I needed her to get into the shower in order to get clean.  Two days this week, I replaced sheets from her having sat on the bed before being cleaned.  She barely moved from her chair all day yesterday and I constantly had to keep the oxygen on her.

Who else would give her that kind of one-on-one care?  She needs far more than most of those I saw at the Assisted Living homes I visited.  This is my decision and I hate it.  I want the perfect situation for her and it doesn't exist.

In case Let Us Care doesn't work out, I should see if I can find someone to work those weekend hours - long enough to come in, get her up, clean and fed for breakfast.

Move into Assisted Living or Remain Here

I spoke with Mom's care coordinator, Suzy, at FRA about Marion Griffin's home.  Marion had said she would call Suzy to speak about her moving in.  She also said she would call us after she had another person look at the room.  She told me this person was referred to her by the State of Alaska.

She has not called.  Suzy offered to call her for me.  She said that if we wanted to move Mom into assisted living, we should do it when there was an opening.  As we know from my previous visits, openings to good homes are few and far between.  On the other hand, if we were thinking of keeping mom at home because she had improved, I should let her know.  But she did remind me that she is all right now, but if I needed to place her later, I would be in the same position of having to wait until there was an opening.

Gary and I talked it over and if Marion will take Mom, we want to place her.   This is going to be hard for both of us. Gary kept saying that he thought Mom was upset about going to Marion's.  He said he couldn't figure out what was upsetting and so asked if she was upset about moving to a new home.  She said yes.  That was interesting because when we were there, she said she was willing to move there.  I thought it was due to the fact that we changed her coat. 

I don't think Gary should put words into her mouth or suggest to her what is bothering her, but he could be right.  The point is that this move will be upsetting to all of us.  We can't really rent her apartment out because she may not fit in and so would need to come back. So in addition to our emotional upheaval, it has an tenuous feel.  I feel unhappy.  I know I can't keep taking care of her without compromising my health and Gary's, but I feel so bad about it. 

I think she could get better care.  I don't know that since I am not in those homes on a daily basis, but I think she would have more contact.  I wish Mom had been feeling better when we went to Hope Haven.  I do know that they check on the clients regularly when they are not in the common room.  I do know they have activities to keep them interacting with each other. 

At Marion's home, everyone eats when they want, so I don't know that Mom would ever be with others. And since Marion has not called me, not any of the times I have visited when she said she would call me to let me know what was happening with the room, I doubt she will now.

Missed Opportunities

It appears that we missed the opportunity for Mom to move into Hope Haven with Gladys Egger.  At the time I needed to make a decision, Mom was not well.  Since that time she has been getting sufficient oxygen due to the good work of the Apria tech and her electrolytes are back in balance.

She is doing more of the work of dressing herself (putting on her own pants, shoes and socks) and does much of her shirt which is harder because of where she broke her shoulder.  She is making it to the toilet on time, although the time for her to be fully independent in that regard is long past.  But my point is that these are all things that would have permitted her to more successfully integrate into that home.

I have not heard anything from Marion Griffin at Let Us Care.

Temperature Cut Off for Excursions

We do have a temperature below which I won't send Mom to FRA, -30F.  By that I mean that it may be colder than that early in the morning, but the highs aren't expected to be too much colder than -30F.  Should anything happen, an accident, a flat tire, or anything that required Mom to be exposed to the cold for any length of time, it would easily become life threatening in a matter of minutes. Mom would not know what to do to protect herself.

An example of that is in her choice of gloves. She wore gloves she'd had forever for years here.  They weren't warm enough.  So for Christmas, Teresa bought her some wool gloves and then two sets of mittens.  One pair of mittens are also wool, and would provide protection at slightly colder temperatures than what is safe for the wool gloves, and those two combined provide yet another level of protection.  A second pair of mittens, when drawn over the wool gloves provide the maximum.

Mom refused to wear the mittens.  There is no way she will accept that mittens are wamer than gloves.  She doesn't like them.

We also bought her a new hat and a new coat.  She loves the hat, but is having issues with the coat.  It is long, its rated to -50F and a lovely shade of periwinkle blue.  The coat reaches down below her boots, so she is not exposed to direct cold throughout her body.

Her coats were always beige with collars.  She put her poodle pin and whatever else she favored on the labels of her other coats. This coat doesn't have a true lapel and she fussed and worried about it all weekend, finally putting it away in the closet because it made her unhappy.  She is no longer bracing her thin little body against the cold when she walks outside to get in the car, but she doesn't truly notice that.  I notice it, but in her mental state, it doesn't register she is safer and more comfortable.

Marilyn is ill today, so we picked her up.  As I watched her come out with Gary I saw this petite, woman coming toward me.  Her wool felted hat was secure upon her head.  Her coat was fully zipped up and snapped all the way down.  She had her wool gloves on.  As she walked toward the car, I suddenly realized she really looked like an Alaskan elder should look - totally bundled up, moving carefully through pounds of down!

Anxiety

My mom and aunt both smoked like crazy. My aunt passed that anxiety to her children, two of whom died last fall, one due to lung cancer.  My mother developed pneumonia which led to her state, vascular dementia, and emphysema.  It's my observation that those smokers who maintain that relationship through thick and thin, despite all the warnings, despite all of the information and seeing those around them succumb to its effects, are those who have an anxious nature.  Nicotine reduces the anxiety.  It is a balm; so the addiction is much more than a straight forward drug addiction.  It is an addiction to feeling okay about things.

When I asked my aunt about why she continued to smoke she told me that she opted to smoke over taking an anti-depressant because she didn't want to become addicted to a mind altering drug.  Isn't that amazing?  My son is the same way.  They choose a drug that does alter their state of mind and greatly damages their health, but do so thinking it will impact their self-awareness less.

But the point I wanted to make is related to how Mom's anxiety affects her as she ages - being far more vulnerable than my aunt who does not have dementia.  I mentioned in one of my posts that we had been giving Mom a simple anti-anxiety drug called, Ativan.  She only requires 1 tablet, although I just read that it may be taken up to 3 times per day if needed.  It is not long-lasting in its effects, but smoothes the edges.  I also have been talking about Mom's improvement over the last few days which seem to be the result of improved oxygen flow and sufficient electrolytes.

A by-product of improved cognition is greater awareness and hence anxiety.  I did not give her Ativan yesterday.  I deliberately do not give her a dosage over the weekend.  Gary told me he went down and Mom no longer showed signs of a stomach problem, but she was all worked up about feeling abandoned.  He said it took a lot to get it out of her, but that is what he ultimately made out of the conversation.

So, the trip to the assisted living home did have an effect on her, and she experienced that from the perspective of one who has an anxious nature and is self-aware enough to feel vulnerable.  She feels she can not chart her own destiny.  I went down later, but did not open the conversation to any topic about her state of mind or emotions.  I asked what she needed for food and continued on as normal without any change in my demeanor.  At this juncture, it will be very important for me to be even in my interactions with her so there is nothing in my manner that catalyzes increased anxiety.

An interesting event occurred later in the day.  As she was getting ready for bed, I told her that Marilyn would be in to take care of her in the morning.  She asked "Who?" which didn't surprise me.  She'd done the same with Pam.  But this time, when I said she came into help in the mornings, she brightened up and obviously remembered her.

Every day I feel grateful for the Apria delivery man who decided to take his MBA here - of all the unexpected places.

Frailty and Strength

Mom's condition blends frailty and strength.  Overall, she is sound for her age.  But when you combine with emphysema, osteoporosis, and dementia, she has vulnerabilities that can not be ignored.

I mentioned that she did well yesterday.  She was able to travel outside the home and remain involved and alert.  Today, she got up and made it to the toilet on her own, despite things still not being back to normal from the looks of it.  She took her shower and shampoo well and put on her sweat pants herself without help from me.  She ate all of her breakfast.

But soon after eating, she began grabbing at her stomach.  I asked if she needed to go the bathroom again, based on what I'd seen earlier.  But that wasn't the issue.  I'd given her her weekly dosage of Fosamax this morning and as I thought about it, I wondered if it had been a mistake to give her the osteoporosis medication on a stomach that had not sustained much food over the last week.  It seems to me that was probably the case.

But I have no way of knowing unless the aching subsides within a few hours.  This has happened before - where the Fosamax has caused her extreme gastric discomfort.  In fact, that was how I realized she couldn't administer her own medication any more.  After falling and breaking her wrist and shoulder, she took an entire month's dosage at once.

So, I will continue to check on her today.  If she is not better by tomorrow, or substantially worse by tonight, I will conclude it was not the Fosamax, but a serious ulcer and she needs to be in ER or 1st Care.

Essentially, she is strong, but there are these three factors that always complicate her life, and my ability to pinpoint what is causing today's mini crisis, all of which makes it harder for her to stabilize.