dementia | Gift of RA

Posts Tagged ‘dementia’

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.

Tags:Breast cancer, dementia, Health, Medicaid, Mom
Posted in Musings | 4 Comments »

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.

Tags:Arthritis Foundation, Blog, Connecticut Chapter, dementia, Writing
Posted in Musings | 6 Comments »

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.

Tags:agitation, contrary, Cookie, dementia, difficult days, Ellen, emotions, Family, good days, Home, Mom, ornery
Posted in Emotions | 4 Comments »

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.

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.

http://www.westcreations.com/bears.html

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.

Tags:Cherry blossom, cookies, dementia, March, Mom, short term memory, Spring, St. Patrick's Day, Tree
Posted in Musings | Leave a Comment »

A Bright Spot In The Week

March 3, 2013

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.

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.

Tags:baby doll, crocus, dementia, discomfort, Mammography, Mother, nature, pain, primroses
Posted in Emotions | Leave a Comment »

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.

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.

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.

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.

Tags:Apple pie, dementia, Medicaid, Parents
Posted in Questions | 1 Comment »

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.

Tags:Cookie dough, dementia, Family, Mother
Posted in Musings | Leave a Comment »

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
Posted in Musings | Leave a Comment »

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 »

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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