Posts Tagged ‘dementia’

Local News

October 13, 2013

I have been lucky to write once a week lately, but that doesn’t stop the mind from thinking of things to write about – unfortunately I am on the freeway, in the shower, it’s 3 a.m., you name the inconvenient place.

It’s been a busy time for the moles, all sized mounds in the yard – I noticed a small one out by the garage; one of the youngsters must have been out trying those diggy feet.  It was a little mound, but he or she has the hang of it already.  That summer holiday must have energized them no end.  Bob next door suggested pumping some gas into the holes and lighting a match – wouldn’t that be something!   As it is, Delores puts down her mole pellets but can’t find an actual hole.  The battle continues.

Mon had her 95th birthday on September 24th.  Delores sent a plant, Ellen sent Mom’s favorite maple sugar candy and a dozen roses and Candy sent chocolates and a lovely teal hoodie and a sweatshirt to keep Mom warm.  I had a light purple knit top and pants with some embroidery.  It was a Tuesday but I had gone for my infusion in the morning and had an appointment at 1, so I didn’t stay long.  mom seemed rather sleepy, so I came back the next day for a bit longer.

I have had some  difficulty finding things to talk about because I understand the first 3 or 4 words she says, then it is mumbling and repeating words.  I haven’t a clue what she is saying.  She doesn’t talk about her mother or father, maybe once in a while.  She doesn’t remember as much of her childhood as she did – we went through the album I brought but she only remembered a few things.  My sister Candy solved the dilemma for me.

She has written an ebook called “The Translucent Heart” and had sent me an email with the book.  So I copied it from the library and have been reading it to Mom.  She seems alert and interested, I don’t always know how much goes in and sticks, but because Candy wrote it, she is interested.  I am on page 93 or so right now – my voice gives out sooner than she loses interest.  When we are done with that, I am going to bring Rosamund Pilcher’s book “Winter Solstice” to read.  Mom loves the book and has read it every Fall since my Dad died.  At one point she asked if I could get her a new copy, hers was falling apart.

Mom is still doing pretty well even though she needs help with everything.  she is aware of some things around her and the people, but she fights Judy all the way when it comes to any caregiving such as bathing, washing her hair or anything like that.  Maybe she feels that is the only things she has control over now.  She still goes twice a week to the Center and as long as she is able to that, it is a very good thing.  It gives her another situation and context to her life, plus her doctor is there as well.  There are times when I don’t really want to go, but she is always glad to see me and I don’t want her to think she has been abandoned.  It is not an easy situation for any of us, but at the moment things are going smoothly.

I finally finished Eddie’s new Round Up design and he will be sending out Monday.  the people in the office have seen it and love it – his boss told him he should charge money for it.  He has been bugging me for the last 3 weeks about when it would be ready to go.  I have been working on it in Group Training for Pages at the Apple store – they have helped me so much with design, learning to use the program and all kinds of other things.    It will take another couple of issues before I really have it down pat.  Eddie is pleased with it and finds it is much easier to do on his MacPro than on the PC.

To see his other ones, PNAA has it on their website.  Click the link here, click News and then Local News.  On the right is a box where his Round Up is listed as The Kaplanian Report.  His new one should be up  in the next week or so.  I am interested to hear the comments on the new design.

I’ve been debating about mentioning this, but putting it out there means actually doing it.  While I waiting for the editing from Toni on his Round Up, I started a book with posts from this blog.  I wasn’t sure I wanted to us Gift of RA because I have also written about Mom and dementia, my own personal development as well as writing.  What happened was a vision of four complete books in as a set.  I decided to call it “Finding the Gift…”; this is “Finding The Gift in Rheumatoid Arthritis”.   It may not be the same in the end as it is in the beginning, but I know I have to do something about this since it has been simmering on the back burner for several years.  I have the journals that I wrote for several years with things that have happened – a lot of information without an idea how to corral it.  Baby steps and see where it goes.  There, I said it!!!

The Usual Mash Up

August 17, 2013

How strange to find so much running around in my head, but the moment I decide to write a post about some of it, I suddenly can’t think of a thing.  Am I the only one?  So, when in doubt, put in a great picture from my sister.  This time they are from Ellen.

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A lovely Stargazer Lily

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A gorgeous Rose of Sharon

I don’t know where she finds them, but the pictures are always wonderful.  She has some amazing beach pictures as well.    I will put some of those in for another post.  These cheer me up and I marvel at Mother nature and the many different kinds of flowers there are to enjoy.   Thank You so much Ellen.

The other night we had thunder and lightning, some shook the house.  then a couple of rain showers but only enough to barely settle the dust.  Usually I am afraid of loud thunderstorms, for some reason I was more curious than afraid.  We have had a few rain showers but nothing one could call a good soaking rain.  I am feeling a bit dry and parched now, I miss the rain and to be honest I feel the way my Dad’s cousin in Southern California did – “Another goddamned beautiful day”.   After having no rain for 36 days,  it is time for a good rainstorm to wash the air and feel that fresh washed clean feeling.  We have had some showers here and there but nothing soaking so far.

I saw my Mom yesterday and I talked about things I remember in my childhood – she taught all three of us girls to do housework, make a hospital corner, and cook a bit.  I said I asked her to teach me to cook one summer and frustrated the heck out of me.  She doesn’t always follow the recipe, when I ask how long to beat it or how long to cook, her answer was “till it looks right” or “till it’s done”.  Not a lot of help but I learned a lot just watching her.  I also remembered hot cocoa and Christmas cookies when we came home from following the Christmas ship.  She seemed to be looking around and I wasn’t sure she was listening or had heard me.  Then she said she was interested in what I said.

Last week she was very alert – I have been going in the morning because she is now at the point where after lunch she is ready for a nap.  She sleeps a lot, part of the progression of dementia.   I bring my iPad to play songs she likes, though my data download was only at 20%.  My older sister suggested bagpipes and Sousa marches, so when I have more download I will do that.  Sometimes I am not sure what to talk about or how much comes through for her.

On the 1st of August I saw my rheumatologist before my infusion.  She was very pleased to see one of the markers for inflammation was down 7 points.  She was thinking the last time that possibly she might have to up the dose some, but decided to wait another week and see how the tests looked.  So I am getting the same amount still – unfortunately energy seems to be the last thing to come.  I have had a little more energy lately as well as feeling better – nothing I can put my finger on specifically, but better than it has been.

We have had more balderdash from the State looking for more money.  However, I have a secret weapon while I have been dealing with them and Medicaid.  Dave my attorney friend has helped so much with Mom and so many other things.  So I emailed him the email that my two sisters received and spoke to him about it.  he wrote a letter to the State to tell why it wasn’t owed, I paid it last year and my sisters had no reason to pay.  I saw him Wednesday at Breakfast Club and said the State decided he was right – no doubt very reluctantly.  Plus I have a letter and so will my sisters.

My childhood program has been not to ask for help or bother people, but  I had to ask for help when Mom began to really have very noticeable symptoms of dementia.  It was the smartest thing I could do in that situation and I found out that it wasn’t a burden to others – they wanted to help me.  What I also learned was that I was not alone, others in Breakfast Club had or were dealing with dementia or something similar in their own family.  I knew they really meant it when they said they understood.

Eddie’s back and we are having a couple over for dinner.  I have taken up this post, then did the bedroom, relaxed, did most of the bathroom – I have to sweep and mop the floor.  then I need to do the kitchen and sweep a bit in the living room.  Two rooms will look great.

One last photo because it is a beautiful photo of one of my favorite flowers – though not the plant itself.

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Inside the wisteria

Where Do I Start?

July 28, 2013

One good place to start is with a couple of adorable pictures from my sister Candy while cat sitting.

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      Kittyboy Litterfoot (Petey)      The Zen Purr Master (Emma)

I have been neglecting this blog for a while because of the kitchen remodel – haven’t been able to let those who like my post how much I appreciate it.  I am even more amazed and delighted to find I have almost 60 followers – that means quite a lot to me.

No doubt (or maybe not) you are wondering what I have been doing for the last few weeks.  There is my Mom and where she is at this point.  I have begun to visit her in the morning, not always easy, because after lunch she is ready for a lie down or a nap.  She is a bit more with it in the morning, we have a visit.  She is having trouble saying what she wants, she tends to mumble more and more that I don’t really understand  it.  There are times when she is with it a bit more and I tell her what I have been doing.  I haven’t told her about the kitchen remodel, I am not sure what she understands and I wonder if it would agitate her.  I tend to go with “If you aren’t sure, don’t”.  Maybe I am just chicken.

She is having trouble with arthritis in her knees, one especially.  She doesn’t like to walk or move because she knows it will hurt, though some days she is doing well and uses the walker.  If it is a bad day, they will have in a wheelchair.  They don’t want to make the wheelchair a habit or she will not walk again.  Last Wednesday was her evaluation with DSHS – I learned things I didn’t really know – or didn’t want to know.  Essentially she needs help with everything,  she can wash her face if they give her soap and washcloth ready to go and she can eat by herself but someone needs to be there to keep her on track.  Otherwise, she needs help or have it done for her in everything else.

I knew she had to have help with a lot, but I didn’t realize the extent – threw me for a loop.   I am still digesting it, I am not sure how I feel about it – I am not sure I feel anything at the moment.  I knew it would come to this and she would only go downhill, I am not sure I am ready for it.  Looks as if I will have to be ready for it.  One thing I have learned recently is to do something after I see Mom, even if it is just to go to Lowes for something for the house.  Or wander around somewhere just looking and seeing what’s there.  I am working on doing an errand after I see her, though I sometimes forget.  Then I go earthing on the Allen’s grass because it is softer and nicer than ours.

She can be very feisty sometimes, not wanting to shower, wash her hair or change her clothes.  However, Judy told me when she is having a good day, she is a darling.  I know it is the dementia that is causing a lot of this,  still hard to see it happen to Mom.  My sisters call her, but now it is hard for them and for Mom.    I had an email this morning from Candy, she had called Mom the other week and this was how she described it.

” I can tell that Mom is “disappearing” by our phone calls. She managed an “I love you, too” at the last phone call, but mostly it is a couple of minutes of me talking, and any answer she gives is so garbled it makes no sense. I tell her we are all fine. I tell her she’s been a wonderful mother and is free to leave, that we will be all right. I tell her I love her. I’m not sure she really knows who she’s talking to, though it is made clear at the beginning of the conversation that it’s her daughter from Nashville.”

A lot of other things have been going on as well, plenty of things for several posts.  I always hesitate to  publish things about my Mom, she is a very private person and she might be upset for the whole world to know.  Yet I also hope that writing about what is happening for our family can be of help and benefit to others dealing with a similar situation.  More early childhood training.

After The Last Two Weeks

May 22, 2013

I was not sure about publishing the post about my Mom yesterday, it is such a personal thing for her and our family.  I often wonder if it is a good idea to publish things so close to me and family – my sisters really are there to help me, I have asked their advice more than once.  I get so close to it that it is hard for me to be objective.   But I found I slept so well last night  that I now realize I needed to express what was inside me.  I am still taking it all in, but I am not scared about it – maybe it doesn’t feel real yet.  I spoke to her doc on Tuesday afternoon and she wants to send Mom to an oncologist to see what options are available.  Fortunately she doesn’t want to invasive and heavy duty stuff  for this – she said we are not treating Mom’s breast cancer, we are treating Mom.  She doesn’t think Mom would do very well in the hospital for surgery, so I’m glad she isn’t hung ho for invasive measures.  The appointment with the oncologist will probably be in about 2 or 3 weeks.

I went to visit her yesterday and took my next door neighbor Delores with me.  She and Bob are going to the canal house tomorrow and won’t be around much during the summer.  So she brought some rhododendron blossoms to Mom.  I was glad to see Mom was doing quite well, I really wasn’t surprised to see her in a wheel chair since her knees have been bothering her.  So we had a good visit and I checked in with Judy on Saturday after the biopsy to see how things were going.   Apparently Mom didn’t have any trouble with the incision, not even sure she remembers it.  I haven’t said anything to Mom about breast cancer – I’m not sure she would understand.  She didn’t ask about results, so I didn’t say anything to her.

I am very grateful to ElderPlace and the people there as well as Didi and Judy – I don’t have to do this all by myself.  I have received a lot of support and encouragement from my sisters and my husband Ed, what a difference asking for help makes.  This whole experience of Mom and her dementia, my broken ankle, finding an adult family home for her, applying for Medicaid, etc. has made me feel more confident and competent to deal with major things occurring. Adding to this is the letting go of all the negative programs and deciding to be who I am whatever anyone one says has also helped.  I feel different, though I can’t really be specific; just a difference.

We went to pick up the check this morning, but realized it is tomorrow.  Eddie wasn’t going to the archives this morning and decided not to go to the aviation conference, so he came to Breakfast Club with me.  I was doing the 5 minute – I am now finding I concentrate on what I am doing and not wondering what Eddie is thinking of what I am doing.  I think he sees a different me when he comes to Breakfast Club.  Not a bad thing.

We have put the remodel in motion, I will be getting the check for Brad to start buying materials.  He is going to get a head start so that when the plumber and electrician start on the 10th, he will have done the demolition, put in a new back door and work on the pocket door.  Brad is going to start doing that on the 3rd.  It doesn’t quite seem real yet, but with check in hand it will.

We have started cleaning out some of the cupboards in the kitchen, last Saturday we filled the wheely bin at least half full on Saturday and made it to the top today.  We took some things over to Goodwill as well, will be packing up more for another trip or more down there.

I am looking forward to my massage tomorrow morning and another good night’s sleep tonight.  There is so much going on inside me, yet I can’t really describe it in detail.  It just is.

A Huge Thank You!

May 1, 2013

I seem to spend more time reading and commenting on other people’s blogs than I do writing my own.  However, I have found some wonderful blogs and delightful people behind them.  I so appreciate them and the 41 Followers I have now.  WOW!  To me that is so cool and amazing.  When I comment on other blogs, I learn about other people and check them out.  I have also had people Like my posts and that is how I find them.  What a fascinating place the world of blogs has been.

When I first started, I wondered if anyone would be interested in reading about RA.  There were people who also were interested in my  Mom’s dementia, plus my every day subjects as well as metaphysical ones.  I am so pleased to have 41 Followers, I so appreciate each and every one of them, as well as all the ones who have liked by blog posts.  Some are in very interesting places and I have learned a lot about things and places I didn’t know anything about.  When there are pictures posted, it really brings it home to me.  Thank You all, it means the world to me.

It has also helped me cope with things, and when I write about dementia, I receive comments that help, support and uplift me.  As all the people who dealt with know, it is not easy and having people who have been through it say they understand, I know they do.  That helps so much as well.  There are so many lovely people out there.

I am following blogs as well, some subjects I have no knowledge or experience with it.  But although the situation is different, I have come to think over the years that there are some basic things we all share in living with and through a difficult situation.   There is something therapeutic about writing down what is happening as well as thoughts and feelings.  I find it helps clear it out for a while and I can see more objectively.  A good cry also helps as well as throwing a tantrum.  It is hard for me to throw a tantrum, I don’t have any experience because my parents were not willing to allow tantrums.  Even a good cry is harder than it used to be – for some reason I know feel there is someone standing next to me watching their watch.  It is as if there is a time limit and if I don’t get on the ball and start crying, time will be up for me.   Where this came from I have no idea, but it does put a damper on things.

Even better, publishing a post that is real, in many ways helps other people.  I’ve learned since my speaker days at the Connecticut Chapter of the Arthritis Foundation that I didn’t often know when I gave the basic facts (along with my own stories) who was being helped.  Sometimes I would have someone come up and tell me and that was always gratifying.  I often thought, it isn’t necessary to always know when I helped, otherwise I might get a swelled head ( childhood program) and my attitude would change and be all about me.  Then whatever it was that was working, wouldn’t any more.   I liked getting the feedback, I knew the more I just put it in the hands of the Universe and I just showed up and got out of the way,  the message would go to who needed it.  I do my best to go on about my business and trust I am helping others.

There are days when I want to write a post and can’t think of anything.  Other days I have several ideas and don’t have time to write any of them down.  Or if I written them down, when I go back to it, I can’t remember why I wrote it in the first place.  Usually I can’t find the list because I have “put it away safely so I wouldn’t lose it”.  There is a lot of that going around.  I remember one day I was somewhere and I thought of questions to ask myself – I was smart enough to put it in the back of my pocket calendar.  I have looked at it several times and wondered if anyone would really care.  So I have it and and I’m still undecided.

I still find myself comparing my blog to others and feel it is lacking (more childhood programs), the other blogs are better.  I am now better at catching myself when that happens, though some still slip by me.   It seems it has taken a long time for me to be aware – living in this time period there are so many more people, classes, etc. to help with all of it.  So much to learn, so much to explore.

So I want to be sure those of you who read, like and follow my blog know how much I appreciate all of you and thank you for a lovely and delightful compliment.

Good Days, Not So Good Days

April 13, 2013

I haven’t been writing lately, seems as if things have gotten in my way – or let them get in the way.  I just put up a new post that I have been working on since the last one I wrote about it.  Could be a matter of Life happening while I am planning.

I have noticed in the last 2 or 3 weeks that Mom has been having more not so good days – or is that simply my connotation of it.  Last week I went to see her and brought two long sleeve tees for her and another pair of slippers.  When I had seen her the Friday before, she had lost one of the ties and was having trouble keeping that slipper on.  So I was going to bring the reds – both pair my sister Ellen had given her for different Christmas presents.  When I arrived, she was asleep, so I checked with Judy to see what was happening.  She said Mom hadn’t been sleeping very well at night – still haven’t quite figured out what is going on or what to do – so Mom sleeps during the day a lot.  I didn’t want to disturb her rest so I didn’t go in.  Judy told me Mom had taken the slipper without the tie and torn it so it couldn’t be worn again, then put it in her pillow case.

So I left the things and said I would be back Friday.  When I came back, Mom wasn’t there – she was at the Center for a UT test that Didi had ordered.  I decided to call on Saturday before I came – good things because Mom was resting.  I called on Sunday morning because Eddie had gone to the Museum Flight to do his docent stint and it turned out to be a good time for Mom.  So I went and had a lovely time with her;  we laughed,  remembered things and it was really good.  She seemed in good spirits and I was glad.  We talked about her walker, that she hated it.  When I asked her why, she said it was ugly.  So I suggested I would get some red ribbon and see if I could make it less ugly.  I told her I had to learn to use one in rehab and I didn’t like it, but I knew I had to so I could get better.  not sure what registered with her.

Tuesday I called before I left o see how she was doing; she had slept late and was eating breakfast.  Delores next door wanted visit so I took her over to see Mom.  She was sitting in the dining room and didn’t say a whole lot.  She had that old woman look – I am going to have to come to terms with that – and a somewhat defeated look.  Delores and I did a lot of the talking, Mom didn’t seem interested in saying much except a few responses to things.  She was cold so we got her the pink shawl and that helped a lot.  But she seemed to tire quickly, so we thought we should leave.

I asked the caregiver if she would help Mom get up and use the walker so she could rest a bit.  The older lady came and Mom took one look at her and told her she didn’t want her near her, to go away, the woman had hurt her and scratched her.  I am not sure how much is true, but I asked the younger woman to watch to see what happens.  I said I thought possibly someone who had helped her up and been too firm on Mom’s hands and had inadvertently caused the bruises.

I am going this afternoon and bringing the sugar-free cookies that I forgot to take on Tuesday.  Friday Jan gave me money to buy them since there are three who are diabetic and sugar isn’t good for the other three.  I was so embarrassed I had forgotten to take them Tuesday – I am upset when I don’t do what I promised – and they were disappointed.  So I have two sets – oatmeal and chocolate chip – and I will give Jan her money back because it was my bad.  I will update this post when I come home this afternoon.

Later that night:

Actually the visit went well, one of the good days.  I suspect the cookies helped as well.  They were all happy with cookies as well.  I tried to give Jan her money back but she wouldn’t take it – I told her it was my bad for not keeping my promise so the cookies are on me.  I found Mom in her room sitting on her bed hugging two of her bears.  The big one now named Marigold after her dad’s middle name.  Now she has another smaller bear, so I asked if it was a girl so we could think of a girl’s name.  I happen to look up at the butterfly hooked rug and suggested calling her Butterfly, but that didn’t go over at all. So I suggest a flower name, by then I wasn’t sure she was interested.

I talked to Didi and found out Mom has been very contrary for a while, not wanting anyone to help her bathe, put on clean clothes, etc.  Apparently she also will pull her hands away in mid lift, so far she has been close to something to sit back on.  Even at the Center she won’t let them near her to check to make she everything is all right.  I asked Didi if it would help if I was at the Center when they want to check her to see if she would be more willing.  We’ll see what happens.  Didi said that farther on she will be at peace with the situation but right now she fights them at every turn.  I have no idea what goes on in her head, I can’t imagine how confusing and scary it is for her.

I wrote this after I came home from seeing Mom, I wanted sleep on it before I published it.

Phooey To The Calendar, It’s Spring!

March 17, 2013

We have had some sunshine every once in a while, sometimes for the whole day.  Plus the temperatures have been mild, up into the 50’s a lot.  I noticed the first flowers started blooming around the first of March – they decided to start blooming even though the official start of Spring isn’t until March 20th.  I have seen camellias, rhodos, even an azalea yesterday all in bloom.  The cherry trees with lacy flowers and even some of the puffy cherry trees are blooming.  I was going home from visiting Mom on Friday and a whole line of cherry trees were starting to bloom.

autumn flowering cherry

http://www.cdaid.org/urban/urbanforestry/autumn_flowering_cherry.htm

The daffodils are starting to bloom in the yard and also next door.  I think it depends on how protected from the cold wind plants are as to how far along they are.  The forsythia is usually the first to come out, they are now slowly emerging.  I enjoy Spring as each plant begins to grow leaves and then blossom while others put out blossoms first, then leaves.  I am wondering how many bulbs are left after the big clean up.

I remember a quote somewhere that really makes my heart glow – The Earth laughs in flowers.

Oh dear, Eddie can’t find Bunny now that he has made the bed, I need to find her.

How she wandered into the office I don’t know, the last time I saw her was on my pillow.  I have been sleeping with her a lot, so very comforting and sweet.  I think her name is actually  Sweet Pea since I find myself calling her that without realizing it.  all is well now.

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Mom’s is in blue and blue feathered hat – you get the idea.

I went to see Mom on Friday, she had had a visitor the day before – it was Luzma bearing gifts.  She brought her a beautiful bear dressed in a lovely gown and a hat with feathers.  It is on Mom’s dresser.  She also brought flowers – little dark pink roses – small box of chocolates and a packet of cookies.  Apparently she spent quite a lot of time with her, though Mom doesn’t remember it.  I have to remind myself not ask about things that happened before the present moment, her short-term memory is gone.  Then she thinks she missed out on something.

My two packets of cookies were anticlimactic, I found some sugar-free chocolate chunk for Jan and also brought sugar cookies with green frosting and shaped sprinkles on top for St. Patrick’s day.  They all enjoyed them and I was glad.  I’m learning not to bring something for the house all the time or they will expect it, once a month is better.  This came from Kathy who is more knowledgeable than I am.  I appreciate her advice and am so glad she came with me to find a home for Mom.

The two new residents are Everett, he is about 86 and in a wheelchair.  He doesn’t seem to be chatty, maybe when I know him better – he certainly scarfed up the cookies in a hurry.  Mom gave him hers, so I gave her another one and said it is for her to eat, not give away.  I don’t remember the woman’s name, she too is in a wheelchair and is about to turn 102 – looks as though Mom isn’t the oldest any more.

Mom still asks about her mother, her grandmother, even Aunt Clara.  I just tell her they are watching over her and preparing a place for her on the other side.  Also that when the time comes, there will be guides to help her through the transition, she won’t have to do it herself.  Sometimes she says she is glad I told her that.  This time she said she feels safe when she is sitting with Jan, but when she is alone she is scared.  I asked her what scares her and she is scared what to do if something happens. I tried to reassure her that everyone in the house is there for her and I am only a phone call away.  She doesn’t think she knows how to use the phone, so I said just ask some in the house – I will be there in 20 minutes.  I hope that reassured her, even for 5 minutes.  That’s a first.

Thursday was a fun day, I had my massage in the morning with Debye and then went to lunch with Kathie Brodie at Queen Mary Tea Room.  We haven’t seen each other for quite a while, she is starting a new business and I have already written many words about I have been doing.  We have so much in common and it turns out it is a two-way street for us – I learn so much from her and she learns a lot from me.  She was talking about finally understanding one of her life lessons, though still hasn’t quite learned because it keeps coming in different ways so she doesn’t see it coming.  Light bulb moment for me!  How amazing that over the years we have both been learning a lot of the same things – talking to her helps put into words what I am thinking and feeling.

We had a lovely lunch and of course a pot of tea.  We both tried different ones, though I love their Creamy Earl Grey.  They gave us a taste of Queen’s Afternoon Tea – I loved it!  Kathie is a big tea drinker and enjoys trying new one.  there is a tea shop in Edmonds she goes to try different teas.  I had an email from her yesterday – she enjoyed the outing with me but forgot it was caffeine and she finally figured out why she couldn’t get to sleep the night before.

It’s been a delightful week.

A Bright Spot In The Week

March 3, 2013

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We are having a lovely sunny day after yesterday when the sun fought valiantly to come out of the clouds – unfortunately it lost and it began to rain.  But today is gorgeous and clear – though at some point this afternoon the clouds will be back.  So I am enjoying the times when the sun comes out for however long and I am grateful for it.

A couple of days ago I saw a small clump of primroses out and the first crocus – it may only be the beginning of march but they have decided it is spring.  Suddenly we have a bed with purple, lavender and white with purple stripes coming up and blooming.  The pictures I took I can’t get off my phone, so I need to figure out how to do it.  So I check Google and found some that are close to what mine are.  It has been a mild winter for us – some very nippy days and nights and even a dusting of snow 2 days in a row.  Last year spring didn’t cone until Junuary because it was so cold and rainy for so long.

Let’s just say it has not been a stellar or comfortable week.  I woke up on Monday morning with the most painful shoulder and neck – I don’t know if I slept wrong or something happened I wasn’t aware of at the time or afterwards.  At that moment, the cause was not on the top of my agenda, the knives and ice picks were clamoring for attention.  Thank goodness I had an appointment that morning with Dr. Cheryl, my chiropractor.  She helped some and then had me rest a bit while she adjusted another client.  Then she came back to me and did a bit more work.  I really appreciated the extra time.

She suggested I rest and eat lightly, tea and/or broth, and just relax.  So I did.  It was still uncomfortable but a little better, at least I could turn my neck again.  I had a lie down and probably rested, maybe slept for about 50 minutes.  Then the phone rang.  I got up and answered it – it was Mom’s doc at the Center.

She had seen Mom at the Center that day and noticed the lump in her breast had gotten bigger since her first exam in August.  She wanted my permission to schedule a mammogram to make sure  exactly what’s going on.  I have had fluid filled cysts several times myself, so I wonder if it is that or something else.  I could have said No since she is 94, but it is better to find out what is happening.  They will let me know in about 2 weeks when the appointment will be.  The part I am concerned about is the mammogram, I don’t think Mom has ever had one and at this point I am not sure how she will perceive it.  The doc wanted to know if I would be there and I said “Absolutely”!

I am glad to report I was feeling a lot better on Tuesday morning, though there were still knives and ice picks.  I went to see Mom in the afternoon and took her the baby doll I had arranged for in September for her birthday.  At the time she didn’t quite know what to make of it.  This time she was very pleased with the baby girl in pink.  My friend Charlotte gave me one of her Lee Middleton dolls, I was overwhelmed.  As I watch  Mom hold the baby, she smiled and was delighted.  She wanted to show her off to everyone.

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The baby on the left looks like Mom’s, she has blonde hair and blue eyes.  She is in a pink bunting of thin pink and white strips and a lovely lace edging.  She also has a pink fleece sleeper like the one on the right, but with the same lace edging around it.

I bought a small oval basket as a bed for the baby and it fit in the open shelf of her nightstand.  As I was leaving, she kept asking “where’s my baby?”, “where’s my baby?”, “where’s my baby?”.    Friday she didn’t mention her baby, so I think it is like most things now – they come and go.  We’ll see how this works out before adding anything else.

Things at the house have changed, John moved out with his cat and now there is another man in his room. I am not sure how old he is, probably looks older with the long grey mustache and beard.  I saw him on Friday but since he was fast asleep in his chair, I didn’t say hello.  Also Jennifer left, she is now in a nursing home right near her sister.  The new person for her room was due to move in Friday night or Saturday morning.  I may see her when I go on Tuesday.

Funny, I feel as if I have spent  a lot of time at home resting, yet it feels as if I have ben tooing and froing when I write about my week.  I a working on another post but have gotten stymied, not sure where it will go.  It took quite a while to finish “Woo Woo, Goofballs and Hocus Pocus Water”; one of these days this one will tell me where to take it.  The fun of writing a blog.

Is It A Merry-Go-Round Or A Roller Coaster?

January 14, 2013

I went to see my Mom twice last week, she seems a bit more alert – wonder if the med is kicking in slowly.  I brought an apple and cranberry pie for the house.  I noticed that was mostly what Mom talked about for the rest of the visit.  They were going to have  for dessert at dinner.  She was very pleased and ready to eat it right that minute.  When I saw her on Friday afternoon, I asked her about the pie – she said she hadn’t gotten any yet.  The others said they really enjoyed it and I suspect Mom did too, she just didn’t retain the memory.  NOTE TO SELF: Don’t ask her about things that happened a short while ago, she probably won’t remember and will go into wanting apple pie.  Once she has fixated on something, she worries it like a  dog with a bone – almost  an obsession.

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She keeps asking about her parents – what do I know about them – and then she remembers they aren’t here.  I usually tell her they are watching over her and preparing a place for her when her time comes.  She will ask several times and Judy said she asks her a lot about them – it feels as if she has a loop playing in her mind about them and also about leaving.  So far when she says she wants to leave, I tell her this is her home, this is where she waits for the train.  It was an easier week visiting her, she likes the people and she says they are very good to her.  It has been 3 months since she moved there, I know it was big adjustment for her, though no idea how it felt to her.

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This is the roller coaster part of the equation – up and down, not knowing what happening with her or what is best for her.  I am still a little uneasy and uncertain making decisions for some one else, especially the person who took care of me as I was growing up.

I am glad to say I am nearly at the finish line for Medicaid.  We had to spend down to $2000, not a penny more.  I bought almost $500 worth of clothes, though I will take them to her slowly since she doesn’t have a lot of room in her closet or drawers.  Then we went over to the cremation place and spent $1400 there – all suggests from the case worker.  She has been so kind and easy to work with, government isn’t usually like that.  The only paperwork left is her latest checking account statement that closes on the 19th.  I think she is approved to start February 1st – if we wait until March 1st, I have to jump through all the hoops again.  Believe me, I do not want to do it again!  According to Eddie’s calculations after we were at the cremation place, there is about $70 left, so I may go and buy her some lotions.

It has been hard spending down her money because Providence takes care of almost everything.  It will be interesting to see how it all works when the 1st rolls around.  It is scary having only $2000 in her account, we are very cautious about our checking account, we like to have a large cushion.  Eddie has been doing Mom’s checking account for 2 or 3 years and he treats it like ours.  So not having much of a cushion makes both of us uneasy.  I keep telling myself that because Providence takes care os so much, if something happens, they are likely the ones to take care of it.

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This is the merry-go-round part – endless forms, sending things in only to have more questions and requests.  I will say that the case worker has made it much easier than some who work in government.  It has also been and education and an eye opener.  However, it is difficult for anyone having go through this experience.  I’m not sure I want to know what the next is that is coming.

The Guilt Trip Bus Is Pulling Out of The Station

November 18, 2012

It has been an enlightening week, especially with the help of friends who know and understand what it is like to have family going through dementia.  (I don’t capitalize it because I don’t want to give it importance – well, it makes sense to me!)  I have been to see Mom three times this week – she must have been very surprised when both Eddie and I showed up yesterday bearing chocolates.  Mom is talking a lot about how much she would like to come and live with us – I have told her “This is where you need to be, this is where you wait for the train”.  She has said it several times in a visit and that she wants to get out of there.  But she wasn’t really happy here either – strangely enough, one friend asked if she is just doing what she has always done all my life?  It didn’t take being a rocket scientist (and I happen to know one) to think about that.

I’m sure a lot of  Mom’s depression is that she misses my Dad – he has been gone for 12 years and she is lonely.  She has always looked at the negative of everything for as long as I can remember.  I don’t know where it comes from, is it childhood, one or more experiences that really left and impact on her?  I haven’t clue.  Since we came to live with Mom, I began to say something positive when something negative comes from her.  We were going down the steep hill in front of the house and she talked about how easily we could over the side and crash.  I just said we could go down with no problem and make it to where we plan to go with no problems.  I realized that all my life I have bought into her negativity and gone along with it, even accepted it.  But that day I couldn’t deal with it any more and decided to turn things around for a change.

As for wanting to leave, I have talked to several people who have dealt with parents and dementia and they tell very similar if not the same story.  My friend Charlotte, whom I have known since 9th grade, went through it with her mother for many years.  She wrote me the other day and what she said really helped:

The reason your mom gripes to you about things is that You were her primary caregiver for quite a while, and she feels “safe” spouting off to you, I think.  You are right to change the subject or just ignore it.  If she presses the issue, you can always say, “thank you for telling me that” or “I’m sorry you feel that way”, and then move on.  Eventually I think it will pass, particularly as the disease progresses.  You are so fortunate she can still talk, even if she doesn’t always say what you want to hear, or even make sense sometimes.  That was the thing we missed most about mom’s dementia–she lost her speech completely, at the end, and for several years had an extremely limited vocabulary, so communication of any kind was difficult at best.  (And last night I had a little meltdown when I suddenly couldn’t think what her voice sounded like; that really bothered me.)

I think the things you are doing for/with the group home are very good, and makes a nice break for everyone.  It’s really very thoughtful of you.  I never thought to do anything like that for my mom when she was in the group home.  And, yes, I’m sure some of the others do have visitors, too, but you might ask and if there’s someone who is really alone, maybe pay a little extra attention to that one, or bring a special treat once in a great while just for that person. 

What she is referring to was my Friday visit,  I took two rolls of refrigerated cookie dough – chocolate ship and sugar cookie – and baked them there at the house.  It ended up that Judy the caregiver did a lot of it because I am not familiar with how their oven works.  We had a good time and the smell of baking cookies filled the house, part of the plan.  We did a cookie of each for every one, so there is still a half roll of each for another time.  It felt very good when they said I had made their afternoon.  It was surprising when Eddie suggested that he would come and we would all do it again, making sure that the owner Didi is there as well.

I have met all the other residents, including Ginger Boy who is John’s cat, except for Wendell.  He is usually in his room because he needs a wheelchair.  I asked Judy if I could meet him and bring some cookies, so we did.  His room is next to Mom’s and he is  very friendly,  he really enjoyed the cookies, especially the chocolate chip one.  Yesterday I went in to say Hello to him – now that I have met him, I want to be sure to visit him whenever I come to see Mom.

So I didn’t board the guilt trip bus this week, I am more comfortable with Mom when she talks about wanting to leave – it is not unusual.  Nor do I have to fix it and make everything better. I only have control over my own thoughts, not anyone else (as I keep saying to myself over and over). As a friend told me, she has chosen to have this experience for her own reasons, just as I have probably chosen to go through it with her as well.


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