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.