Archive for September, 2012

Still Looking

September 23, 2012

I have been able to take a little time off from calling places since I had a talk with Denise, the social worker.  The places I told her about and the ones I sent to her didn’t turn out very well – one would take Mom but wanted us to subsidize her – I don’t think so!  The problem is the new regulations Providence put into the system this year, the homes aren’t going for it.  Denise said she has seen a trend and that means not only is it more of a challenge for me, it will be a challenge for those looking after I find a place.  So she said she would talk to her director and see if there is some leeway.  So we talked again Friday and said she could see a trend and possibly have to find new homes to work with – plus she does have a little leeway for Mom.  She wasn’t specific and I didn’t ask.  She is on holiday until next Thursday, so I have some time off to relax and go to my NWPMA Pro-D day and Showcase.  I haven’t done much in the way of business with my promotional marketing, so this is an opportunity to see friends who are distributors and suppliers.

I was surprised to receive an email from Denise at the end of the day Friday – she had the name of a home that will take Mom.  Denise hasn’t seen it, so Eddie and I going this afternoon to check it out with Kathy.  It’s in the same neighborhood of the one that wasn’t – a few blocks north.  I haven’t really thought about it, just taking it as it comes rather than getting my hopes up or putting any emotion into it.  We’ll check it out and go from there.  If this isn’t quite right, then I will start calling again on Wednesday and send the promising ones to Denise to clear before I go to see any of them.

It is a relief in some ways not to have to call for a bit, it can be discouraging though most people are quite friendly and easy to talk with about it.  I know they need a certain level to operate and of course they would much rather have private pay.  But Providence supplies everything for their clients, all the home owner has to do it let them know.  Plus all go to the Center at least once a week so the doctor, nurse and therapists see them and check anything that is out of the ordinary.

I am finding myself starting to shut down with Mom, it is so hard to understand what she is trying to say when she only has the first 5 words of her thought – then she can’t remember or get the words out and it is very frustrating on both sides.   When she asks questions like “Why am I here?”, “How do I get out of here?” or  “is my mother here?”, I am at a loss for an answer.  I haven’t a clue what to say and I can’t imagine how it is for her.  She seems so lost and confused, not understanding what is going on a lot of the time.  I am glad to say she is fine going to the Center, I haven’t heard her say “I’m not going back there again!” for a while.  Now she asks everyday and evening if the bus is coming to take her to school.  Last night she asked if what she was wearing was okay to walk in the parade today.  I have no idea what she means or what parade, but I told it was fine.  She hasn’t said anything this morning about the parade, about what I thought would happen.

When I am in the office, she will tell the caregiver she needs to talk to her mother, sister, aunt, grandmother – you name it.  So she comes over to the door and I say hello, not sure who she thinks I am.  If the caregiver says I am her daughter, Mom’s response is “I know”.  More often lately she has been asking if her mother is here; when I tell her no or that I haven’t seen her, she asks if she is dead.  I hate to say yes, because it seems it is sudden, upsetting news to her.  Then I tell her that her mother is watching over her and waiting for her to make the transition.  Maybe it is too much information – I’m not sure how to handle it.

I realize I have learned a lot about this dementia, but it doesn’t feel as if I have practical things that help Mom.  I tend to go off to the office or bedroom and allow the caregiver to be with Mom – is that hiding or making it easier for the caregiver to do what she needs to for Mom.  Today she is quite happy with Aster, it is a good change since often she seems unhappy with whatever caregiver is here.  Every day is different.

Square One Again

September 19, 2012

I want to whinge so much today, I am feeling sorry for myself, frustrated and to be honest, tired of fitting my life around my Mom’s; canceling or postponing what I want to do to accommodate what she needs done.  How can one person require so much from so many people?  Yes, I do resent it and am angry at times – still haven’t taken all the emotion out of it yet.

I have spent the past few days waiting to hear if things are finally set for Mom to move into the adult family home – yesterday I had a call from the owner of the home, she has decided not to do what is necessary because it is just for one person.  So I am back to square one.  That means today  I will spend on the phone calling homes on the list to see if there is a vacancy and then go visit.  I feel discouraged but not as upset as I was last Wednesday when the glitch came up at the last minute.  I did ask God, my angels, spirit guides and master teachers to work it out – this or something better.  I was willing to start over again – not my preference – and so here I am.  That means there is something better out there.  The difference is that I have a much better idea of what I am looking for than when I first started looking the last time.  So it is “pull up my socks and get on with it”.

Before I could do anything, I needed Mom to be out of the house, but the van didn’t come until 10:30.  Then I had to call and find out how to cancel her Costco credit card, then fax info over to someone new to see if finally I can accomplish it.  Then I needed to shower and dress; wow, did that shower feel good, especially knowing I was alone and didn’t have Mom standing at the door.  Then I decided to have a cup of coffee – also had to water the roses because they are parched from no rain.  Then I realized it was after noon, so I fixed lunch and relaxed for a bit.  Then it was time to start calling other adult family homes to  see what was available.

I had talked to Denise in the morning about the situation and she is going to check 6 of the others in  Des Moines and I was going to call the ones in the Burien area.  Denise suggested giving them her name and number so she can check to be sure they meet the requirements providence has, that way I would only be seeing the ones that  would  work.  Out of the ones I called or checked out, there were 5 that were possibilities, so I told them to contact Denise for whatever information they needed.  I emailed her the names and she sent back saying she had 12 to screen.  Were they ones I sent her or did she find 6 others as well?  I really don’t know.

I have had two call me back to say they have tried to contact Denise but the center is closed today.   I appreciated that very much and I will see how it all goes.  Tomorrow after my massage, I have lists of the other zip codes they service and I will call them to see what might work.  I feel like the little girl digging through the manure pile because she is positive there i s a pony in there somewhere.  I know there is a place for Mom and also a gift for me in all this, I just don’t see it at the moment.

Most people are very nice when I call and ask about the home, if they take Medicaid and now also Providence.  I think it can narrow the field, that can be a good thing.  I did talk to one woman I really liked, she doesn’t have a vacancy but one of her ladies was just put on Hospice and may have a vacancy in the possible new future.  She suggested calling her in a while to see how things are.

It is an uncomfortable and discouraging experience at times, but there is also a feeling of accomplishment after going through the lists and calling.  I find myself having trouble getting started, then once I get going, I am okay.  It is easier than when I did it the first time, but I would dearly love to have someone tell me they have the perfect place for Mom and  it has everything she needs.  I’m not holding my breath for that one.  I will soldier on and see what happens tomorrow.

I am so worn out and tired from all this, I feel like crawling into bed and sleeping until the situation is resolved.  No chance of that without me doing the work and  going to see the places.  Kathy said she would go with me and that helps so much.  She notices things I don’t and I am relying on her knowledge and experience to help me make a good decision for Mom.

Dementia and RA

September 16, 2012

I have been wondering over the past few weeks and months as my Mom has been slowly going deeper into dementia – how much  has taking care of her and dealing with the stress and frustration impacted the RA and my body.  What differences will I notice once she is established in a good adult family home?  I know it means there are still things to take care of, to keep watch over, etc.  Will there be less stress, less pain and  less difficulty moving?  One thing I think will be better is that I will finally be able to rest and have some energy again.  I have been feeling bone weary for quite awhile and no way to really sleep well at night to re-energize.  I’m not sure how long it will take to really rest, but not having the day to day difficulties and frustrations will certainly help.  Also knowing she won’t be walking around and suddenly come into our room and wake us up out of a sound sleep will help a lot.  A few months back we were sound asleep and suddenly she came in at 2 a.m. flashing a flashlight in our eyes.  She kept asking “How do I get off this boat!”.  That came out of left field and I am happy to say she hasn’t done it again.  It may take some time but I won’t be wondering if she has fallen in the middle of the night or during the day so I have to call those very friendly fellows from the Fire Department to get her up on her feet again.  And it will be so nice not to have to suddenly cancel my life because she needs something.

I have had neck and shoulder problem since March of last year – at times it is better and other times it really hurts.  I tend to say it is computer and too much mother – there may be more truth in that than I realize or would want to admit.  I know my Mom  can’t help what dementia is doing to her; I have probably not handled as well as I could have – it has been a learning experience for both of us – I wonder how much has registered with her.   I am not going to second guess myself and beat myself up because I wasn’t perfect – I did the best I could with the knowledge I had at the time.  It is constantly new territory, sometimes I do well and other times I have allowed emotions to rule; doesn’t come out that well when that happens.

I suspect I am tight in my muscles, tendons and ligaments as well as in the joints or how I hold myself.  I feel as if I have spent my life “bracing for the onslaught” – though I can’t honestly remember when I first felt that.  So I have probably held myself tightly most of my life, definitely not conducive to relaxing and being at ease.  Lately I have noticed I get a bad pain in my left hip – I can tell it is from Mom and I have allowed her to control my  choices.  Also, the left is the feminine side – go figure!  She has been a major, controlling figure all my life and it isn’t easy to change gears at this time of life.  But By George, I am doing it!  My Dad would say “By The Lord Harry!”.  I was very pleased and  flattered that Debye tells me how she admires me for doing this work at 65 – too many people have given up by then and think themselves too old.  I decided when I turned 60 that the last third of my life was going to be the best – I knew it meant changes and as uncomfortable as it has been at times through Ike Pone, massage with Debye and the other things I have done and learned, it has been worth it.  I have this need to understand and “Know that I know” who I truly am and love, accept, approve and trust myself completely.  I am getting there but I expect it to be a life long journey – I am a work in progress.

I will admit I feel I have been doing this with Mom for so long that I don’t remember what life has been before coming here 10 years ago.  Any more than I can remember age 23 and younger when I didn’t have RA.  It feels as if I have always had it; the difference is that I am not seeing myself as victim any more – an innocent by standing minding her own business and sideswiped by RA.  Strangely enough, I am learning that it may not have been something that started in this lifetime, that it has been from a past lifetime.  In my massage with Debye and also time with Monty I have learned I was a Roman soldier in another lifetime.  Thursday Debye had a picture of his leg hurt – I could picture it myself.  Yes, I know it sounds woo-woo and goofball to some, but  in some ways it makes sense to me.  As that soldier, I imposed my will on others and there has to be an energy balance for that – karmic balance.  I am still learning, but in many ways a lot of what I am learning gives me different angles on having RA.  I am determined to understand what happened and is happening as a way of  creating a healing.  Call me crazy if you want.

Hugs and High Fives

September 15, 2012

With all the stuff happening with my Mom, I hadn’t really paid much attention to how I am walking and what’s going on with my hip.  I am pleased to say that I don’t use my cane much, though I do have it in the car in case I go somewhere unfamiliar or with a lot of people around.  Most of the time I don’t use it – Wow! that is so cool!  All the hard work over the past few months has really paid off.  This week as I was coming back from the adult family home to pick up papers to sign, I decided to go visit my friends at Stafford Health Care.  I have planned to do it, but my goal was to be at a point that I could walk in there without my cane and be about the way I was walking when I fell.

When I walked in, it felt very familiar, as if I had come home.  I went over to the therapy room first and surprised the therapists.  Most of the ones I worked with are still there, Tony left to be a substitute at different centers Consonus contracts to; Sebrina has moved to Florida.  But Carol was there – we spent many hours together and she  devised new games to help me stretch parts of me that weren’t working as well.  I forgot to ask her if she is doing “Tape My Butt” with any one – she had a great time doing it with me.  And it worked.  Marilyn is still there and I had a hug from her; Michael is still there and showed me pictures of his daughter, now 6 months old.  Marion who was my occupational therapist was there and was pleased to see how well I am doing, plus a couple of therapists I hadn’t worked with but know me.  Arthur is now full time – he was a substitute and was away for a bit.  When he came back, the other therapists wanted to surprise him because they kid him about his mustache.  So someone found some stick-on  mustaches and had them all on when he came back to the therapy room.  I was the only patient there and they gave me one as well – was he surprised to see us all with hair on our upper lips.  He laughed and was up for a group picture as well.  They did a lot of kidding around but they also did a great job of helping all of us improve so we could go home.  It felt good to hear them say I am one of their success stories.

I went down tot he first floor to see Eleanor, she was my aide most of the time and a wonderful woman.  She had to do everything for me in the beginning and took wonderful care of me.  As I got better she began to tell me “You can do ti, I’m not doing it for you any more”.  yet when I had that terrible flare up and she found me bawling my eyes out sitting on the toilet, she was a warm loving Mama Bear comforting me and helping me to do things.  She doesn’t suffer fools gladly, but when you need help, she is there for you.

I was so glad she was working that day, so I went down the hall until I heard her voice.  I found the room she was in and stood in the doorway until she saw me.  Then I stepped away a bit so she could finish with her patient in that room.  I got a big hug from her and she was delighted to see me walking without a cane.  She did her job well and I am so very grateful to her.  She too said I am one of her success stories and it was lovely to have such a warm welcome.  I also stopped by the nurses station and said Hello, most of them I recognized and they recognized me.  I felt so at home there – though I have no desire to go live there again.  I have said I would miss seeing all my friends when I left to go home and it still feels that way.

I didn’t see Katrina because she was doing showers on the third floor and I don’t think LeAnn the nurse was working that day, nor did I see Theta – I was sorry not to see them and give me hugs as well.  But I plan to go back again ever once in awhile.  They said very few people come back to visit – I wonder why.  In spite of the pain and difficulties during those 8 weeks, it was a very positive experience for me, all those wonderful people made the difference.  I am so glad I went to visit, I was delighted to see them and it was wonderful to have such a warm welcome.

Moving Day That Wasn’t

September 12, 2012

When I went to Breakfast Club this morning, it was Moving Day for Mom to her adult family home.  I had spent yesterday creating lists of what she will take and getting some things ready.  Kathy came over this morning to help me choose her clothes and I got to use my permanent marking pen to put Mom’s name on the labels of her clothes. Kathy did laundry so everything was clean and ready to go.  She came by yesterday afternoon to have Mom pack a suitcase so she would feel she had a part in the process.  At the time Kathy left, she had some questions that I needed to ask Jas today.

I called Jas and asked the questions and she answered them for me.  Then she told me a situation had come up about  one of the requirements from Providence.  She was checking on it and would let me know.  I called Denise, the social worker, to see what she knew and what was happening.  I must admit, it really upset me that  there was a glitch that looked as if moving wasn’t going to happen – I might even have to start from square one again.  I felt like crying and Kathy said to just let it out – so I did.  There is still some left but I think I got a lot of it out then.  There is disappointment, let down, upset, frustration and  I am not sure what the emotion is about not having my life back after all.  I will admit to counting down the days and thinking last night it was the last night Mom would sleep here.

Kathy suggested we go out for lunch because I needed to get out of the house.  As we were leaving, Jas called and said she was going to take care of the requirement fully.  I said that was great, that we could do the move next Tuesday or Wednesday when everything was verified  by the social worker.  That way it isn’t a hurried situation.

I was thinking this morning that it was in God’s hands, whatever works.  It was a little hard to remember that when the glitch surfaced.  I got into a panic and thank goodness Kathy was there to calm me down and it is only a glitch.   I did do a few “God help me!” while setting an intention of surrendering, allowing and being willing.   The good part about it is that we have decided what to pack for her, so that is done.  I have gotten most of the items labelled, though some present a challenge.  So I will have to work out how to label those in the next week or so.  The other thing is that if I had to go looking again,  I have a much better idea of the kind of place I want for Mom.

Since all of this came to a head about noon time or later, it throws an spanner in the works for me.  Sheila who assigns caregivers didn’t think she would be able to have one for tomorrow morning because it is short notice.  She isn’t sure about Friday either and she will check to see if Aster can come Sunday and  someone for Sunday.  Also, Eddie is coming home from 3 days in Spokane, about the time Mom will come back from the Center.  Two people need to be picked up and there is only one of me.  So I will collect Mom from the Center tomorrow, come home and wait for Eddie to call and then the two of us will pick him  up at the airport.  He called late this afternoon and was very surprised when I told him the two of us would be there to pick him up.

If no one shows up tomorrow, I have to be here until the van comes, but I have some business for Mom I need to take care of before my massage.  And I AM NOT going to cancel my massage, I have had to cancel too many things lately to take care of things for her.  This is for me and I so need it!

It has been an emotional roller coaster all day, I am ready to sleep, I just hope I can and not oversleep tomorrow.  I did this morning but was still on time for Breakfast Club.  Mom has been asleep since at least 6 – not sure if she will be up wandering around later or not.  Yes, this too will pass.  There is a purpose, a gift and a lesson in all of this, right now I am too tired to look for it.  It will all reveal itself at some point.  The one thing Kathy said was that I dodged a bullet.  Suppose I had moved her there and she had settled in, then had to take her out because a glitch happened.  That would be so much harder for Mom, I am not sure if she would transition a second time.  Strangely enough, Mom hasn’t asked about moving, she kept asking where her mother is – this is something new, asking about one or both parents.  Too bad I don’t have a good answer for her.

Now Mom Knows

September 11, 2012


I just realized the post I wrote yesterday was still only a draft – I was sure I published it.  Well, now it is published for all the world to see.

I must admit, I have been dreading to day because I needed to tell Mom about the new home – I didn’t think she would be too happy about it.  Yesterday I talked to Kathy on the phone about how to approach it and she gave me some very good suggestions.  I had been wondering what to say and worried about how she would take the news.  I realized, at least in my head, that I needed to give it all to God, my spirit guides, angels and master teachers as well as Archangel Michael to help Mom have peace.  So I  had to really talk to myself about it, to release all the worrying and over analyzing, to just let it all go.  I truly had to put it in their hands for them to give me the words, actions, attitude, thoughts, etc. to tell Mom.  I had to not only just show up and get out of the way in my head – it had to be in my heart as well.  Strangely enough, I was fairly calm, though had trouble going to sleep last night.  I kept thinking about Mom, the things I could say, how she might react – second guessing about things that hadn’t even happened.  So I decided I needed something else to think about, so I switched to quilting – that actually did it for awhile.

When I got up this morning she was very confused, asking if this was her parents house, etc.  She ended up go in and out of bed 2 or 3 times – I was feeling anxious because I wanted to “get it over”.   But I knew that was only for my benefit, this had to be  about Mom and when the best time  would be for her.  So I waited until she was fully awake, dressed and had had breakfast.  Then I sat her down at the dining room table to tell her.  I mentioned the house she had stayed for a couple weeks and the lady there, Lucy; not really but that didn’t matter.  I told her I had found another home for her, a real house with a large yard, a place to be outside when it is nice and  how pretty it is.  I said the lady who owns it met her at the Center and talked to her; thought she was sweet and made her laugh.  She liked Mom so much she has invited Mom to come and live in her home.  I mentioned a little dog who loves people that comes to visit and there are some other ladies there.  She wanted to know when and I said on Wednesday.  I feel as if I had smacked her in the face, she seemed a bit stunned.  So far she isn’t angry, though she wonders how she is going to be able to do it all.  I told her I would take care of it for her.

I called Kathy and told her I had told her and she seemed to take it well.  Kathy planned to come over and visit, bring lunch for the two of them.  After I hung up, I made phone ring and pretended it was Kathy and told Mom she was coming to visit.  Mom was delighted because she really likes Kathy.  She stayed for about an hour or more, Aster and I were in the office talking.  So far Mom hasn’t said much, maybe she is trying to process it.  We’ll see what happens.


Mom didn’t say anything about moving to her new home, though Monday morning when I told Helima it would be her last Monday because Mom is going to a new home, Mom seemed confused.  So I just reminded her we had talked about it the day before and she  just said “Oh”.  Then  yesterday afternoon and evening she asked if she is going somewhere and when.  She seemed okay with it – I still don’t know how much has registered.  Kathy is coming to help today and tomorrow – I think having her will reassure Mom.

As for me, I am so tired and dragged out, I find everything takes so much energy and effort.  I did go to my caregiver support group yesterday afternoon – I think I have a difficult time, but the others have so much more to deal with than I do.  I did make an appointment for a massage with Debye on thursday morning, then I need to pick up Eddie in the afternoon.  Friday I want to meet Charlotte and accept her generous offer of the weighted baby doll – other than that, I don’t know.  At the moment I haven’t planned ahead, just want to sleep.  I know things will look different when I am more rested.

Relief And A Smack In The Face

September 9, 2012

Thursday was supposed to be a day for me, but it ended up mostly about Mom.  I had a call in the afternoon from Denise, the social worker – Jas had visited with Mom at the Day Center and thought she was sweet.  She has agreed to have Mom come and live in her adult family home.  She can come on Tuesday or Wednesday of next week.  Yikes!!!  It was such a relief that everyone agreed to have Mom live there, but it was like a smack in the face to realize it would be next week.  I had to just let it sink in and simmer on the back burner for a bit.   When I called her, it was the beginning of family training.  I was working on quotes for a client in between phone calls, so I worked on that for awhile to let it settle and not feel so immediate.

Of course, the next thing is telling Mom and making the transition.  I called Kathy on Friday and asked if she would help me with it since she knows Mom quite well.  I also called Jas to thank her for having Mom come to live in the house and to decide what day.  I’m not sure if it was relief or just letting go of stress about it that made me feel so tired – I have been exhausted for the past several weeks.  I went to see my chiropractor in the morning and went to an engagement lunch for my friend Chloe Ann – I know her from Breakfast Club and have been living vicariously through her for the past year as she has been doing online dating.  It is something she never thought she would do, but with help from friends, she did the preparation work to be ready to find the right man.  She feels she has and they are going to be married at the end of the month.  He lives in Vancouver, Wa and they plan to live there and rent ChloeAnn’s condo for a while.  I’m glad I had some time for my own things, then I drove up to the Center to sign the papers and pick up Mom.  She didn’t know I was coming, nor does she know about the move.

I talked to the social worker and learned some things about Mom, some of the things she does at the Center and some things I didn’t know she liked.  One thing she told me was that Mom really enjoys holding the weighted baby doll they have – that was a surprise.  So I decided it might be a good idea to buy her one for the new home.  Of course I checked with my doll expert Charlotte.  She has been collecting, repairing and making clothes for her dolls and also when she worked in the doll shop.  She offered to give Mom one of her weighted baby dolls, a girl in pink.  It is a really nice one and I am so amazed at such a generous gift.  When I was at the Center, I asked to see the baby doll she has been holding so I could see if it is similar to the one Charlotte has.  I think so.  So I will happily accept her gift for Mom.  She also has been enjoying holding a very large bear – I checked my supplier and they have one I can order so Mom has another option.  I may not do both all at once, just see how things go.

I talked to Kathy today to find out how to start the process of  transition – she said we need to tell Mom now, plus she will come by to visit after I tell her to help reassure her.  So I will tell her tomorrow morning and then Kathy will come by about noon with salads to have lunch.  I’ll just tell Mom Kathy called and wanted to come and visit.  We’ll see what happens after that.  She emphasized I need to make it positive and to say that Jas has invited her to come there to live.  I am just going to ask God, my angels, spirit guides and master teachers to give me the words, actions, attitude, etc. and I will just show up and get out of the way.  Otherwise I will worry and agonized about what to say and wonder if I “get it right”.  Unfortunately I tend t0 over analyze things, driving myself nuts.

There has been a small part of me that has been feeling a bit guilty for doing this.  The social worker said something that helped me feel better about it – she said Mom is at a good stage for the transition because she is still social.  If I wait too long, it may be much harder for Mom to adjust.  Jas suggested not seeing for a week, maybe two while Mom adjusts.  Then visit for only 15 minutes, bringing her something.  then Jas will distract her and I need to leave quickly.  One step at a time.

Waiting Isn’t Always Easy

September 6, 2012

This came from the Universe today – I could have used it earlier but no doubt this is just the right time.  I have been apprehensive, concerned, scared and unsure in finding an adult family home for my Mom; this has really hit home for me.

Lee, when you move, I move. When you reach, I reach. And when you go the extra mile, I clear the way. But not a moment sooner.

Which is why before you move, reach, and go, things sometimes look so scary. 

 Just like that,

    The Universe

Lee, “I do” if “you do.” Settled? I now pronounce us unstoppable.

I so appreciate the daily note from The Universe during the week – so often it is spot on to what I am thinking, doing or wondering about in my life.  Certainly finding a place for my Mom has been one of those very uncomfortable situations; I am so grateful for The Universe already creating the solution (even though I wasn’t really sure) and all the people who have been helping me all along the way.  I am so glad I don’t have to do it all by myself – I would be bouncing off the walls a rubber room by now.  I have had help from Providence, Kathy has been a great help and Eddie as well.  When it comes to Mom’s financial and business affairs, I have had a lot of help from my Networking Breakfast Club – Dave our elder law attorney, people who know about houses and property, others who have had to deal with the same kind of situation, caregivers, etc.  I have such support from friends and family to help me take care of myself and have a more objective view of the situation – I am still on the emotional  end of it, not as much but still there.  Plus God, angels, spirit guides and master teaches to help and guide me.

Monday on Labor Day I called around and found one place with an opening.  Eddie and I went down there and spent almost 2 hours with Jaswir.  (She said I was the first one to pronounce it properly.  She goes by Jas)   This is a double wide manufactured home that has room for 6 people.  The room Mom would share is what used to be the master suite, so it is larger and has a bigger closet, and a bath they both share.  Her room mate is a woman with Dementia, though quite articulate and friendly.  The other woman seem to be at about the same level of function as Mom and they interact with each other.  They eat together and there is a covered back porch as well as a nice area in the front they like to sit – Jas said they love to be outside when it is sunny.  I had a better feeling about this home and arranged for Kathy to come and see it with us yesterday.  I was pleased that she liked what she saw and when she talked to Jas – she can see and notice things that I don’t know to ask.  So today Jas is going to meet Mom at the Center and assess her level of function and the Providence records.  She has worked with them before and knows Mom’s doctor, Kathy thinks that is a real plus.  So I am hoping they can reach an agreement.

This is where I really have to let go and put it in God’s hands – this or something better.  I am not anxious to go calling any more, but I willing to do it if it is necessary.  Yesterday was attorney and mortgage day – we talked to Dave and Tom to see the options for the house and what will work for us.  No decision but now we are checking to see if refinancing with a loan of our own and some extra to fix it up is in our budget.  Brad came by and we explained what we are thinking of doing, he will now give us and estimate and see how that fits with a loan with a reasonable monthly payment.

I want the whole things settled right now, but it is a time of constant patience because so much of it depends on other people doing their job.  It is hard to be patient, I’m doing my best.  This has been a time of learning and growing – not always a comfortable process.  I have been learning about myself as well as about Dementia; it seems to be more clear at times when I look back at what has just happened.  I am realizing a lot of childhood programs and triggers, plus seeing how I have been influenced in my adult years with out realizing it.  Now it seems as if I am growing stronger and more adult as Mom diminishes and is weaker.  She has always been a very strong influence on my, maybe when she is gone I can finally be myself.  That is what my friend Kathie Brodie found after her mom died.  The other important things she learned what what her mom was teaching her – it was never clear and when she talked to another friend who talks to angels, she finally understood.  It was her aunt who said she could now be herself.

It truly has been an uncomfortable time, that means I have been and am growing, stretching and learning.  Truly out of my comfort zone.  Several friends have told me that I will be glad I was here for my Mom. that I will have no regrets.  I admit I  regret I have not been as patient as I wanted to be, it has been hard to be with her as a friend – I am hoping when she is settled in her new home that we can have a more enjoyable relationship.

Someone’s Life In My Hands

September 2, 2012

It is scary to realize I have to decide the direction my Mom’s life will take.  It is a big responsibility and I want to do what is best for her and for us.  My biggest fear is making the wrong decision about what adult family home will be her new home – I know it has to be done and I am looking for the place that is the right fit for her.

The program I enrolled her in at Providence has done a great job of providing so much – a day center to interact with other people, all her medical care, supplies, help in finding a place for her, pharmacy – it is a great program.  I have gone to see three adult family homes, the first was okay but had a lot of drawbacks even though the owner is known for her patience and good care of dementia patients.  The second is a good potential place, still some questions to answer.  The third was okay but a bit far out from us and not quite as nice as the second.  However, the woman who owns it is good with dementia patients where the second is a somewhat unknown quantity.  But I need to look at others and let’s face, labor Day weekend is a bit difficult to find people home.  I have looked through the list and made notes, so I now have to at least drive by and see how they look.  Some have a picture of the front, but not necessarily very clear or angled for a proper look.  I also used the satellite photos as well, I could see fairly close and tell if they have a back yard, how big the house is, etc.

This all makes me very uncomfortable, I know being uncomfortable means out of my comfort zone, stretching and learning; I’ll be honest, I would rather have someone else do it.  But it is my responsibility and I need to make sure it works for Mom.  I feel as if I am between a rock and hard place – it’s getting very difficult to have her living here but it is difficult to work on the process of finding her a place to live.  I get that tickle of fear in my stomach and want to be anywhere but here.  Yet I know God has already created a solution that works and I am working on letting go and allowing the solution to emerge.  It isn’t easy because I keep obsessing about the whole thing because I don’t want to “get it wrong”.  I feel sharp pains on my left side from my spastic colitis  as I think about what to do and where is best.

My life would be a lot easier and less stressful with Mom in an adult family home.  I can’t give her the care she needs and to be honest, I don’t have any patience left.  I have to cancel my life to accommodate her or to do the things that are necessary – doesn’t leave much time for my life.  My business is down the tube because of it – though the broken hip didn’t help either.  She goes to the Center 4 days a week, but that doesn’t leave me a whole lot of time to do much.  And if she isn’t ready for the van, as happened last week, I had to take her over – there went my day alone because I also needed to talk to the social worker.  By the time I got home, I only had time for a nap.

I am at the end of my energy, I am tired physically all the time and as for mentally and emotionally, I am so weary and getting close to the end of my rope.  It is very energy and time consuming even with care givers here, I couldn’t do it without then. I tell them every time how much I appreciate what they do and thank them for being here – I also had quite an education when I was in rehab.  I told all the caregivers thank you and how much I appreciate every thing they do.  After a bit I would ask if they were tired of hearing me say it; most often they said they weren’t tired of hearing it, it made up for those who never said anything.

I have started reading a book called “Contented Dementia”, recommended to me by my caregiver counselor.  Yes, I have one and we met last Wednesday.  I have seen her several times, her job is to be there for me and help me understand what is happening as well as solutions to situations I don’t know how to handle.  She thought this book would help me especially in understanding more about what is going on as well as how to answer some of those questions Mom asks and I don’t know how to respond.  Lately, Mom has asked about my Dad and was really upset and unhappy when I told he was gone – it was as if she had not heard the news before.  Wow! does that make me feel terrible!  She now asks where her parents are, so I am learning to say they are here.  If she asks where they are, I tell her they a far away.  She has asked me where my mother is – the first time I told her she is my mother.  You would have thought I had hit with a cattle prod because she looked so shocked.  Now I have learned to say my mother is at home.  If Mom asks where, I just say she lives close by.

Every day is different and I wonder what the day will bring – something funny, a question I don’t know how to answer, her stubbornness and refusal to take a shower or change her clothes or not wanting to go to the Center.  All I want is some peace and quiet.

An “Interesting” Week

September 1, 2012

It has been one of those weeks when all I wanted to do is whinge – that’s why you haven’t seen a blog post from me.  I need to keep my promise of a no whinge zone.  Life has certainly been interesting lately, it feels so much better to come out of the tunnel than being stuck in the middle with no light in the distance.  The drug study I was on was a real trip – I usually don’t get such bad side effects from drugs, but for some reason my body was not happy with the whole thing.  The frustrating part was finding that it was beginning to help, but side effects that made me so miserable weren’t worth the trade off.  I think I am almost back to normal- though now instead of diarrhea, I am constipated.    Well, at the momentI I can deal with that.

The group doing the drug study is really great, they were really sorry I had so much trouble with the drug.  The only part I will miss is seeing my “friends” there, that’s how I have come to feel about them.  We kid around and I give Chris a hard time when he comes to draw blood – many tubes of blood!  I tell him he looks too eager when comes into the room, that I see through his sweet Southern boy “Aw Shucks” act.  He actually does a very good job, I hardly feel it.  Apparently I run like a faucet, so they don’t have trouble collecting blood for their tubes.  I have one more visit and I am done – last exit visit.

They have another study for another drug, they gave me information about it.  I read through it and it made me uneasy – so much more blood work and 4 visits where I have to stay 6 hours.  At this point I can’t stay that long and it doesn’t appeal to me.  Doing the blood monitoring was no big deal, but this sounds a bit more than I am willing to do.  I’ll bet that is the one with a shoe box full of tubes instead of box about a third the size for the one I did.  They were very understanding when I declined, it didn’t really surprise them.

I went to see my rheumatologist last Thursday, it’s been 6 months since I have seen her.    So Jenn, her nurse, asked me if there have been any changes, so I told her about my broken hip.  Turns out they know my surgeon as well.  The doc gave me two bits of information I didn’t want to hear – a broken bone doesn’t work as well as if did before the break and 70% of people who break a bone, break another within two years.  I have decided I am in the 30% that didn’t.  She was also delighted to hear I am on Medicare, now I can qualify for the biologic drug she has been wanting to put me on for 10 years.  So she is going to check to see if it it will work to cover the cost.

I am happy to say I am beginning to sleep at night again, no more gas and bloating or upset stomach where I have to drink baking soda and water to help relieve it.   I have been so all mighty tired this last week or more, I kept falling asleep in the chair while Judge Judy was on.  I had a 2 hour nap on Tuesday  because I was so beat – it helped some but at least now I am doing better at this moment.

I had my first Tai Chi lesson last Sunday while Eddie was at the Museum of Flight.  We met in Des Moines at a small grassy area near the pier – not as quiet as I thought it would be.  But I just decided I was going to work on it and if people thought we were a bit nuts, that was their perception.  The first 15 minutes or so was some explanation, then he taught me the “Preparation”.  It is the warm up to the form.  I have to admit, the warm up is a bit like patting the stomach and tapping your head.  I don’t know if I have quite gotten it, but Ron said even if I get wrong, it will still give me benefit.  For the last few minutes he taught me the beginning of the form, two sets of movements.  It looks easy but not as easy as I thought.  So I have something to practice and I may do another lesson next Sunday on his day at the Museum.  Not sure what I will do long term.

Yesterday I did something for me, I spent the day with my friend Charlotte.  We met at University Village and wandered around Paper Source because we both like it and found some wonderful things.  Then we had lunch at Blue C Sushi – what a busy place!  The Friday before labor Day weekend is probably not the best time to go because we both had to twirl around the parking lot to find an open parking space.  It was a lovely day in the 70;s and we talked non-stop about everything but what is worrying each of us.  It was a great break for me and for her.

Nothing earth shaking happened, it was just an upsetting and difficult week or more and I didn’t want to unload on you.  I ran across this cartoon and thought it really made a very pithy point.


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