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Things Are Looking Up

October 28, 2012

This has been a better week, I am starting to sleep better, so I must have rested enough to sleep. I still have those nights, but it is slowly getting better. Thanks to my chiropractor and my massage therapist, my shoulder and neck pain is a lot better than it was. I had a great massage session because I was able to release the pent up emotions in my chest and abdomen, I have no idea what they are specifically and apparently it isn’t always necessary to know the details.

The most positive thing this week was my visit to Mom on Wednesday – she was doing well and said she liked it there, the people were good to her and she didn’t ask how long she had to stay. They all really like her there and yesterday Eddie and I went over with a cake for the house. Kathy suggested it and I am so glad she did. We bought one of the Panera Cinnamon Crumb cakes and every one had a piece, with some left over for another time. Mom has said several times that she thinks Eddie doesn’t like her, so this helps dispell that notion. I’m glad we went. She does keep asking about her parents, do I know where they are. I have to tell her I don’t know, then she will ask if they are dead. I say yes, they are watching over you and preparing a place for when it is your time to go. She keeps saying she wants to go now, so I don’t have an answer for that. I was also pleased to hear from Jan, one of the residents, that they love having her there. I was also glad to hear Kathy came to visit as well.

So now it is time to fill in the forms for Medicaid, when we pay December’s payment, there won’t be much left in her checking account. It takes 6 to 8 weeks to apply , so it looks as if it will be mid December before I find out. I have been working on filling out forms, finding papers or making changes to others – will the paperwork never end? I am going to ask Denise, our social worker to look at the forms, etc. before I send them in to make sure they are right.

As for the house, we want to redo the kitchen, so we are applying for a loan that will cover the remodel and the home equity loan. If Mom isn’t accepted for Medicaid, we will have to sell the house and use the money to pay for her support. So we are taking things one day at a time – God has already created the solution, we don’t know exactly how it will show up. We may have to go to Plan B – whatever that is. Somewhere I heard of a book title called “Living With Uncertainty”. Wonder what the author recommends. Right now it is just working on the things that need to be done now, then look to the next step. Ain’t Life a kick in the head!

This blog sometimes is the strangest thing – I find I want to write pages and pages and other times I sit her and struggle to decide what to write about next. I seem to have come to a standstill right now, I had so much I wanted to write when I was having trouble with neck and shoulders. I keep thinking it is because I am still so tired, yet I know I can’t be using that for all the things that I still haven’t accomplished. I will admit to still getting used to being in the house with just the two of us. It is so nice not to have the time limits any more, that I can get up and go early with Eddie when I want.

I am at a point where I need to decide what direction I want my business to go. I am not sure, plus I have some other things I want to check out as well. I know it is important to know where I am going and what I am meant to do, but I have been thinking this is not quite the time to decide, not while I am still resting. How strange to think it is now MY time, I have spent so much of my life focusing on other people, it feels odd to think about myself.

Tags:Eddie, God, Massage, Medicaid
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RA Consequences of the Move

October 21, 2012

When I wrote the post yesterday, it was mainly about the move, Mom and the aftermath. I can’t believe I forgot to mention that I was miserable because my right side was so painful in the neck and shoulder. It was as bad as last year after I spent so much time on the computer doing quotes for a client. I didn’t do much in the way of lifting or doing things, though I suppose not wearing my collar while I worked on the inventory lists on the computer might have done it. At times it was like an icepick in my shoulder, I couldn’t move any way that wasn’t uncomfortable – even the hot tub at the spa didn’t really do it. My knees were also very unhappy – they have been uncomfortable for awhile – could it be The Preparation from my Tai Chi lesson? I was really hurting when I was taking stuff to the garage to put in the car.

So not only have I been exhausted, I have been in pain as well – let’s face it, that doesn’t help with energy. Stress causes difficulty and flare ups; that means the body is using all her energy to fight the RA and flare up. Not much energy left for anything else. I have done the things I have to, some things for myself – like Olympus Spa – and on Monday I went to see Dr. Cheryl, my chiropractor. She was able to take most of the icepick out of my shoulder, so I was more comfortable. I saw Debye for my massage and learned I have some emotions stuck in my abdomen. People have told me there is a lot of emotion connected with this move and the whole situation – so far I haven’t really identified it. At the moment I am not ready to go there – though I was in the bathroom a few days ago and had a knowing there is more emotion below the surface than just the feelings of frustration, resentment, anger, etc, from the past few months and years.

I went to see Mom on Tuesday, she was sleepy and not quite with it, so I wonder if this has tired her out a lot as well. I saw her again on Friday and she was more alert and with it. However, both times she asked why she is there and if she has to stay. I told her it was her home now and she is safe as well as taken care of by the caregivers and Didi. I have no answer for her other than that – I know I can put myself on a guilt trip and although I am not boarding that bus, I felt a foot or two on the step. I know it has only been a week and a half, it does upset me to have her ask. She keeps asking about her parents, if I have seen them. Then she asks if they are dead – it seems as if it is the first time she heard it. I tell her they are watching over her and preparing a place for her, they are waiting for her. Then she wants to know how she can get there – all I can tell her is I don’t know, no one has come back to tell us how it all works. I don’t know if that helps or not. I am wondering if my visits are making harder or not. Apparently she was asking about me and she was glad to see me. She says it is a nightmare there, but they are good to her – how accurate are her perceptions? I need to ask Didi what works for her about visits.

I know this is stress for me, not good for the body, mind or spirit. Several people have told me I have done a wonderful job taking care of Mom as long as I have. Here is that negative take coming up – I didn’t do it to the absolute nth degree, I have be irritable and have yelled at her – not patient enough. I have to stop and tell myself taking care of her has come to affect my health and my marriage, I have to protect myself or I will be back in rehab (if I am lucky!) For so much of my life I have felt responsible for the world, of making other people happy at the expense of myself. Now I am learning to switch gears to take care of myself first so I will have overflow for others. Are they childhood messages or the ways a middle child operates? Probably some of both – my older sister Ellen would tell me “Ditch it, girl!” in no uncertain terms.

As a result of the shoulder and neck pain, I haven’t been able to really use the computer or pen to write about all of it – it really bugs me because it is one of the ways I can release and clear out a lot of stuff I don’t want to hold on to any more. I also have projects I want to work on and there is my business that has languished for two years so that there isn’t much of it left. I wonder how it will feel to be finally rested and have energy – it is been so long. Certainly it is easier to do things with a lot of energy – I just cleaned the new bathroom, had to rest, now it is time to do the floor. Imagine doing it all at once and not having trouble bending and reaching, plus have the strength and elbow grease for those places that really need it. I am looking forward to that!

Tags:Energy, guilt, Health, Mother, pain, rheumatoid arthritis
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A New Beginning

October 20, 2012

I have no idea what to call this post, it feels as if it has been a very long time since I was able to write about what’s been happening. Maybe something will come to me as I write.

On the 11th of October I moved my Mom to an adult family home – I could not have accomplished it without Kathy’s help. Mom left for the Center , then Kathy came over around 10. She ran 3 loads of wash so everything would be clean for Mom as she started out in her new home. Kathy knew what to pack and did a lot of it. Most everything was labeled except a few things and ready to go. I am not sure what I was doing, only that I was busy and time was passing by very quickly. I think I spent time making inventory lists – except my mouse was losing battery power so it took so much longer as it disconnected and then reconnected.

By the time we were ready to leave, it was after 1. We put things in both cars – Kathy was able to put Mom’s white chair in her car. That way Kathy would have her car when she wanted to leave. As we unpacked the cars, I realized it was getting near time to pick up Mom; Kathy, Didi and the caretaker Judy helped unpack while I went over to pick up Mom. I was concerned about how Mom would take to the move – she had been fine with it when I told her Sunday night when she initiated the conversation. So I decided I would just take it as it came and not anticipate negativity.

When I went to the Center, I couldn’t find Mom, she had gone walkabout. Apparently she gets a bit restless about that time of day and they take her for a walk around the facility. So we found each other and we went to the car. We were fine until it seemed a long time to her – she wanted to know where we were going. I told her we were going to the new home we talked about. She did seem to think it was a long way away – from West Seattle to DesMoines is a bit far. I told her Kathy was waiting for her, she had helped fix up her room. On the whole it worked out very well.

I will admit to being exhausted by then, so tired I couldn’t see straight. Kathy had to leave to get some sleep because she was working all night. I stayed a bit longer, then said goodbye to Mom – they took her to see John’s cat in his room, so I don’t think she noticed I left. I was feeling a bit faint when I got home – I hadn’t had time for lunch – not a smart move. Eddie took me out to dinner and I felt better after something to eat. I thought I would go right to sleep because I was so tired – not that night. I think I was too tired to sleep plus I was uncomfortable as well. So I didn’t have much sleep that night, getting up at 4 to go with Eddie wasn’t a big deal. I was spending the day at Olympus Spa by myself and just sit and soak, have tea and lunch there. After awhile in the 104 degree pool I was feeling really good, I had trouble keeping from falling asleep. After awhile I went into the lounge room and used the foot massager for awhile on both feet – boy, that was great too.

Then I went into the tea room and enjoyed some jasmine tea and lemon rooibos – sat and read – unfortunately I forgot my book in the car. That was okay, they had magazines. The next time I do it, I am going to take a notebook and write. I went back to the pool for a bit longer until it was time for lunch. One thing I noticed that concerned me, my hip scar and that area was sore – maybe too long in hot water.

I had a lovely lunch the went back for a little more tea. After a bit I decided to do the foot massager again but they were all being used. I was having trouble staying awake, so I got dressed and went out for some fresh air. That helped and then went back up to the Future of Flight. I was glad to see several people up there, it has been many months since I was last there. Did called to let me know how Mom was doing, then talked to Mom – she asked if she could stay there and I told definitely she could. Then Eddie was ready to go home and I slept off and on all the way home. We had dinner and went to bed early. Now that night I slept very well.

I did not expect this drag my ass tired, I figured tired but not this much. Several people have said I have had a very emotional upheaval and shift – I am not sure what all that is. To be honest, I don’t know what I feel nor does it seem to have sunk in yet. I am just going from one day to the next until I feel more rested. I’ve had some days or periods when I was feeling a bit rested, then back to tired again. The last few nights I have been sleeping better – last night, not so much. Fortunately there aren’t any things that need my immediate attention and study. Rest is foremost on my agenda right now.

Tags:adult family home, drag my ass tired, God, Mother, moving, Sleep
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Back To Waiting

October 7, 2012

After finally making a decision about Mom, I was back in waiting mode again. The group at Providence had to do its business office drill and I wasn’t sure what the outcome would be. I will be frank, the thought of having to do it a third time was not something I wanted to contemplate, much less do again. But I put it God’s hands and asked that everything would done in a way that works. I have been very neutral this week, not that excitement and relief I had the last time. Maybe it is self preservation because it was such a let down with the other house fell apart.

Monday after I saw Didi the second time, I emailed the social worker to report on the three houses I had seen and also my visit to Didi. She wrote back “Our agency will complete the screening process and I’ll let you know as soon as I know if everything has cleared.” I wasn’t sure what to make of that. I thought it was settled – Didi had said the papers were ready, they were waiting for me to decide. So I spent the week wondering – I did email the social worker to say I was a bit confused. She wrote back that they are doing their best to take care of it and Mom – the process is slow. Hmmm, sounds par for the course when officialdom is involved. I had thought we could move Mom on Thursday – though I wasn’t holding my breath. Good thing because it wasn’t moving day after all.

One thing that kept my mind off the situation was the three days John spent with his crew to cut back the rest of the jungle. By George, we have a right side to our garage now. I had forgotten how wide the north side of the house and garage is – it has been so overgrown no one can go through it. John unearthed more tires and couple of car parts – had no idea they were there. He also gave us the view back, gave the fruit trees a haircut and also the blueberries. He kept his crew working, just as hard as he works himself. There are other things that need doing but this is what made a huge difference. I didn’t want to have everything done because I didn’t want to freak out Mom – I think this is more than enough at the moment.

Since Thursday wasn’t moving day, I went and had my massage, oh did that feel good! I have been clearing out so much negativity and programs – still more to go. What’s cool is that even though it is deep tissue massage, it doesn’t hurt as much as it did in the beginning. I actually fell asleep a couple of weeks ago. Debye is amazed at how different my body is from when we started, she sees it changing and healing as she is working. She also said she admires me for doing the work, most people at 65 have decided their life is done and not interested in doing the work. She says I am very determined to get to the truth – all I know is that I want to “know that I know” who I truly am and love, accept, approve and trust myself.

Friday I went to see my regular doc and he was pleased with ow I am doing; plus he was asking about Mom. I told him what the situation was and he is fine with that. I also had my haircut – not much left of it but so much easier to wash, comb and go. I wonder sometimes if it makes make cheeks look chubbier, yet I have been given many compliments on it. I will keep it and see what happens.

I also played telephone tag with the social worker Friday, she just asked me to call, no info otherwise. I figured it could go either way, so I kept the neutral feeling. We finally talked and the house has been approved, now she just wants to know when the moving day is. I need to call Kathy – she is on holiday and I don’t really like disturbing her. I want her to help with the move because Mom likes and trusts her and she also has a lot of experience. I suspect Mom may be very angry at me – if she needs a target, okay, I am it. I am going to ask at Breakfast Club for a driver and pickup so I can take two of her chairs to the new house – she will have familiar things around her.

I still don’t have that excited feeling, very little emotion on it – wonder if that will change when the move is made? I will say, I got a really good night’s sleep Friday night. Last night was okay but some time I was awake in the middle of the night. I am not making any plans for the days after Thursday, I want to be sure it is actually happening and she is settled in. That may take a month or more, in case she needs to come back, things are still the same.

Tags:adult family home, emotions, Mom, social worker, waiting
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I Ran Out of Zip Codes

October 7, 2012

I have really missed writing posts the past couple of weeks – the word that came up to describe how I felt about it is constipated. Considering my past experience with the drug study, it seems rather appropriate. Anyway, I am still bone weary and to be honest, my neck and shoulders have been very uncomfortable even though I now use the mouse with my left hand.

The last time I wrote was almost 2 weeks ago and I was back making calls. Providence has certain zip codes they serve from the West Seattle site, so I went through all of them – though decided Beacon Hill was just a bit too far. I looked at a place in Seatac, a house run by a woman, her mother plus she has a 13 year old special needs son. she only takes 2 people, the woman there had a stroke but moves around quite well. It has a family feeling and maria has experience with dementia, my only concern was there really wasn’t enough socialization for Mom. Back the the lists.

A lot of places are private pay, they can’t afford to pay their caregivers on Medicaid. I can understand that, though I would like to have seen the Star Lake one – bet it was nice. The social worker emailed me before she left on holiday a name and number, so Eddie, Kathy and I went out to see it. It is near where the other one that fell through is and it wasn’t hard to find. Didi is a RN and only takes referrals, she doesn’t advertise. Mom would have her own room – a bit small – and is right across from the bathroom. There is a living room where she can be quiet if she likes or spent time in the tv room with the other residents. There are 5 others there and one man has a cat in his room. Didi says she is very generous in sharing the cat. The other residents are well functioning and eat together as well as games and other activities. it is a quiet street and Mom could go walking when she likes – they would make sure she has someone with her. She would also go to the Center, probably 2 days a week. I must admit, we all had a Yes and No reaction to it – I know no house will have everything perfect.

So I went back to my lists and spent a day calling – I found 3 more and went with Kathy to check them out.

The house in West Seattle is a small house for 6 people – with a urine smell. It feels too small for the number of people and the tv is on the wall of the bedroom. There’s really no place for her to have some quiet time. All residents are from Providence. Kathy feels it is warehousing and not the right place for Mom.

The first house in Kent with Gloria is a nice, clean place but she would be sharing a room – there really isn’t a space of her own. The bed is open on both sides and Mom needs to have the bed against the wall for her feeling of security. Gloria and her husband live there, the other residents don’t seem all that alert. They do take the people on outings and there is some interaction.

The other one in Kent is on Railroad Ave – right across the street from the tracks. It is not a nice neighborhood, though the house is new and spacious. The room they showed us isn’t certified yet – it is rather dark and she only has a curtain on the door. There is another room with another lady, the shared door means Mom goes through a corner of the other one’s room. It is Saliem and her husband and two young sons – they live upstairs and the residents are downstairs. It too has a family feeling like Gloria, but not much access outside. If you just want to stay inside, it is a good place. Not sure how much interaction because the two guys in the back prefer to be in their room and the other 2 we met said Hello.

I had to sit down and write out for myself the pros and cons of each. I crossed off Railroad Ave right away – the trains are loud and it really isn’t for Mom. When I looked at Gloria’s, it had a lot of good points but more drawbacks. I decided to go visit Didi again , that wasMonday. I had a nice talk with her and she had said she felt after observing and talking with Mom at the Center that Mom would fit in. Didi said she only takes people she feels will fit in with the other residents – she has had several people look at the room but they weren’t a fit.

I have been having a lot of pain in my left hip all week – I looked it up in “Feeling Buried Alive Never Die” to see what she had to say. The first one on the list is “fear of making a major decision”. So spot on!!!! It is one thing to make a major decision for myself, it is more difficult for someone else. I had a hard time saying yes, not sure what was holding me back. But I finally told Didi yes, I would bring my Mom to her home. She thanked me for trusting her with Mom.

Tags:adult family home, choosing, emotional decision, Mother
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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.

Tags:adult family homes, dementia, questions, social worker
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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.

Tags:adult family home, Medicaid, Mother
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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.

Tags:dementia, rheumatoid arthritis, Stress
Posted in Musings | Leave a Comment »

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.

Tags:Health, no cane, rehab visit, therapists, walking
Posted in Musings | Leave a Comment »

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.

Tags:adult family home, dementia, emotions, Mother, The Universe
Posted in Musings | Leave a Comment »

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