85th Birthday Party

We threw a suprise 85th birthday party for Ma in June. Our kids and grandkids came from North Carolina, Kentucky, Florida and Massachusetts to join in the fun. Ma was completely suprised as each additional family member arrived. She still remembers all of the grandchildren's names and I think all of the great grandchildren that were here. Unfortunately, my brother and his family weren't able to come from New York where she has another great grandson. Audrey took beautiful pictures for us to remember the fun and I had some of them made into a hardcover book for Ma to keep.

Rug Cleaning Ma Style

I have a 5x7 rug on my deck outside the sliding glass door. Obviously, because it is outside and is heavily traveled, it gets dirty. It is under the roof so it doesn't get rained on unless it comes in sideways. One day last week, Ma dragged the vacuum from the house and vacuumed the entire deck including the rug of course. Evidently sweeping it, spraying it off with the hose etc. just didn't get that deck clean enough.

A day or two after the vacuuming she decided that there were a couple of black spots on the rug that could not be tolerated so decided she was going to clean it and asked Debbie to bring her some laundry detergent. She got her scrub brush out and started scrubbing these spots. Evidently there was a chemical reaction between whatever was on the rug and the detergent so as she scrubbed a bigger and bigger area Debbie could see the rug was taking on a purple tint ( its a tan rug). She mentioned this but Ma kept right on making more and more of the rug purple. When the black spots didn't disappear she told Debbie to get her the bleach. Debbie advised against the bleach but when Ma demands bleach, she expects to get bleach!

So, the bleach arrived and Ma started scrubbing the offending black spots with the bleach. Of course, now the areas being scrubbed became white. At this juncture, Ma decides that actually what is needed is that the whole rug needs to be washed, not just spot cleaned. She tells Debbie to put the rug over the railing of the ramp. We are talking about quite a heavy rug, plus now it has been gotten somewhat wet so it's not an easy move.

Debbie drags it over and is going to put it over the lower railing but absolutely not! Ma wants it on the upper rail so Debbie has to hoist it up there. Next Ma wants to hose and the broom. The next fun activity Debbie gets to do is have the rug sprayed with the hose so she can then use the broom like a scrub brush. So, there is poor Debbie scrubbing rug, trying to get it clean enough to pass inspection by Ma.

Rain was threatening and Ma certainly didn't want the rug to get wet with rain water (who knows what the difference would be ) so she had Debbie go get the top to the canopy tent and put the tent over the rug on the railing so it wouldn't get wet from the rain.

Not knowing any of this, that evening when I went to put the dog out I noticed there was no rug by the back door and saw that the tent was over the railing and saw the rug under it. When I asked Ma what the deal was, she informed me that she had cleaned the rug and asked if it was a problem.

The next day we had a lot of rain and wind and the tent got put away and the rug had several days of intermittent torrential rain pouring on it. I imagine by the time it dries that it will be mildewed and the original black spots will have been joined by many more!

Prophetic?

We have some wonderful ladies that care for my mom while I'm working. Ma has been having quite alot of pain lately and has also been quite weak so her time outside has been pretty limited. Today I received this email from one of the ladies -


She was very tired today. She fell asleep in front of her rose bush on the deck. I finally got her to move under the cover of the deck. I tried to get her to come in at that time but she wanted to stay out to watch the hummers. She told me if she were to die she would like to be on the deck watching all the birds, especially the hummers. She has never talked like that before to me.

Post Secret

I often visit "Post Secret". It's an interesting site posting new secrets each Sunday. I recently saw this one and know there are those that can identify.

The Toothbrush

One night when it was taking a particularly long time for Ma to get her teeth brushed etc. I went into the bathroom to find her with a toothbrush in - well, I guess you would say a unique condition. She had blue painters tape wrapped around the bristles holding them up and some little brass clips holding the tape. Then I asked her what was up with the toothbrush, she explained that this was to keep the bristles standing upright. I told her that when the toothbrush is in the drawer there is no pressure on it to make the bristles spread apart, that it just happens when you brush your teeth. She said she knew that but this way at least they would be upright when she started.

Cell Phone Tales

We used to have a home phone and my husband and I had cell phones. If the phone at the house rang during the day, Ma would get mad if the sitter answered the phone since she felt that if we weren't home, it was her responsibility. Well, calls would come in for us and she would attempt to take messages and of course when we got the message (if she remembered to give it to us) it would be written so poorly and/or spelled so weird and numbers missing in the phone number we had a hard time calling people back. If the sitter tried to assist her she would get furious at them. Sometimes it was calls about doctors appointment changes etc. and we just never could count on getting the correct information.





When we moved to our current house, we decided we would not have a home phone and that we would get Ma her own cell phone so she would have that one to answer without fighting with anyone about it. I always give my cell phone number for any of her appointments so that has worked out well. The only calls she gets are from my brother and her friends - the 2 that are left.


The first phone I got her was very basic, big numbers, just open to answer etc. I got the voice dialing set up for her so all she had to do was open the phone and say the name of the person she wanted and it would confirm the name of the person. So, she would say "Jim" and then the recording would say "Did you say Jim?" and she was supposed to say "yes". She always thought there was actually a person asking her this and so she would say extra things like "yes, I want to talk to Jim". Of course the recording would then say "I'm sorry, I did not understand your response. Did you say Jim?" I , of course tried again and again to explain that there isn't anyone there, that it's just a computer voice and would review what she needed to say, only to have her say it was just too confusing.



She misplaced her phone a few times and went into a panic. I would tell her I'd just call her phone and we'd listen for it. She would ask how I was going to call her phone when she didn't have a phone number. Each time, I would tell her that she did, indeed have a phone number and I would again write it down for her on her calendar or someplace where I thought she would have it and it wouldn't get lost. She has always been amazed at how easily I can call her phone and we can find it rather than tearing the house apart and searching every pocket, cushion , flower pot etc.



I overheard a conversation with her friend Hazel - Ma told Hazel that if she wanted to call her, all she had to do was pick up her phone and say " Ruth" and she would get connected. I wonder how many times Hazel tried it with no success.



She ended up dropped her phone in a wet situation and I had to get her another phone. Of course, the model she had was no longer available so the one I got for her required her to say "Call Jim" instead of just the name. Of course, the same voice is there asking her questions, telling her they can't understand her command etc etc. so at this point, it's pretty much useless for her to try to call anyone. Despite my best efforts to get different types of cases for her phone, it is always stashed somewhere that makes it difficult for her to get to it and by the time she fumbles around with it, the caller - generally my brother - has hung up. I have attempted many times to show her how to see who called and just push the green button and it will dial them back. Sadly, this has not been very successful either.

Bedtime

It usually takes about an hour to get Ma into bed for the night. We have a routine where she pulls up to the side of the bed first. I get the top of her pajamas on. I try to lessen the number of times she has to get up and down so I take the pajama bottoms into the bathroom and while she is going to the bathroom I put the bottoms on, saving another time of getting up and down which is getting increasingly difficult. Then she spend about 20 minutes brushing her teeth and washing her face. Then it's on to the bedroom where she wheels around the room, stopping at the bird cage to tell the bird to ring her bells and say nite nite etc. Then she wheels over to the side of the bed, I help her onto the side of the bed and then it's pill time. Then lift her legs into the bed, then get on the far side of the bed, get ahold of her pj bottoms and pull her over a few times to get her in the right position. Then I arrange the pillows the way she likes it and cover her up for the night. I can't help but wonder when I say goodnight and close her door, what she thinks about. She knows that something is not right in her head. I worry that she's upset about it and scared. I had a knowledgeable person tell me that for a person with dementia, their days can be like it would be for me to be going to a new job. That feeling of anxiety at not knowing what's expected, not knowing where things are or who's who. I don't think she feels that way all the time, but I think she does part of the time. She just doesn't know what's expected or what she's supposed to do. I tend to try to over explain things and "straighten her out" like I would do with other people. Although I know she has dementia and her brain is not the same as it used to be, it's very difficult for me to grasp that things I say to her don't compute all the time. It's very sad. When I close that door at night I feel sad for her. I love her and wish there was something that I could do to fix her.

The Powder Wars

As many older ladies do, my mother LOVES to put powder on her body. She has these little tub things with a powder puff in it and she wants to powder everything from her underarms, between and under her breasts, between her legs and under her belly. First of all, I have tried to explain that this powder puff is nasty. Using this thing day after day in these areas is just plain gross.

The other issue with this is that she puts so much on that it is nothing but a caked on mess of powder that has now gotten sweaty and nasty and causes her skin to break down. The latest was such that I had to get the doctor to call in a prescription for medicated ointment to get it all healed up.

In our "discussions" about this, Ma has asked me if I don't use any powder on my body. I have told her that I do but first of all I use my clean hand that can be washed after the application of the powder wherever I want it and also washed before I do it again and I'm not using a nasty powder puff that's been powdering all areas of my body! She just shakes her head and says she doesn't understand and if I don't want her to use powder she won't.

The other day, one of the sitters, Babz, was sweeping out my bathroom into the kitchen where Ma was eating her breakfast. Speaking to herself, Ma said " Hmmp, all that powder - it must be caked on her someplace !" I can assure you, it is not!

Demolition Ma Style

Ma sometimes has trouble operating her motorized chair. She'll do fine for awhile and then BAM!! The damage that gets done during these crashes is like the elephant in the room that no one mentions. Her bathroom as been the worst. She hit the door so hard that it drove the door stop right into the door making a large hole. Fortunately it is at the top of the door, so it's not that noticeable. One wall in her bathroom seems to be her favorite crash site these days.

It was in bad shape with holes galore. She decided she wanted to have her bathroom painted and one of our sitters agreed to do it, but of course the wall needed to get patched. The sitter - Pam - was very patient and kind and patched the wall, sanded it and painted it. Within one day it had scrape marks where Ma got too close and the arm of her chair was dragged along the wall. More holes have had to be patched, sanded and repainted several times in several weeks.

I have seen Ma go full speed ahead into our fireplace, into furniture (which has all kinds of dings and scrapes now), into the railings on the deck, into bricks around the gardens etc. Sometimes she just can't stop. She completely loses it and even if you are telling her to stop or that she's running into something she still keeps going. She rarely says anything after one of these episodes although sometimes refers to the chair having "just taken off".

Today before I came home I called the morning sitter - Deb - to ask her to come in a little early tomorrow as I have an early appointment. She said that when Ma was pulling away from the breakfast table, instead of going through the door, she went the other way and crashed into the wall under the window. Deb said she seemed totally disconnected from the incident. Of course, when she realized what had happened, then she wants Deb to get the patching compound out to patch the holes.

When I got home she was eating at the table and the extra kitchen chair was pulled over in front of the patched area, I guess so I wouldn't notice. I don't want to embarrass her so I just pretend I don't see these things.

Water Conservation-Ma Style

My mom loves to garden. It is the one interest she still has. She is outside as soon as she can get out in the morning and is hard to get in at dark. She looks at plant catalogs like a kid with the JC Penney Christmas. She will go through them and circle things, bend over pages and make lists galore of all the things she wants. She will present me with this and ask if I will call in an order. I always tell her I can do it on line and of course she doesn't understand how that works and she'll tell me that if I do that I won't get the wonderful savings of the coupon they always put on the front of these catalogs to make her think she's getting a real deal. She also feels that time is of the essence since the money saving coupon is only good until such and such a date. I'm always telling her that there will be another "special" in the mailbox tomorrow but there is all this urgency in her mind to ORDER NOW!!

She has presented me with orders for almost $300 in plants. I say-"no Ma, I'm sorry, I just can't spend that kind of money on plants right now". She'll say that she can't believe it is that much. Once, without thinking I told her to add it up and she would see that it was $300 and that the $20 off wasn't really going to help me much. Since she couldn't add it up, I got out the calculator and showed her the total. Reluctantly she started going through the book again like a disappointed kid to see what she could live without.

Part of gardening , of course is watering. She LOVES to water things whether they need it or not. Unfortunately, our water is not cheap and we have had drought conditions. Last summer when the water bill hit $130 for a month my husband (who usually doesn't say much about Ma's hobby costs) hit the roof and said he didn't care if every one of her darn plants croaked

I always hate to tell her about bills etc. because it makes her feel like she is a burden. What I DID tell her was that because of the drought, we were under water restrictions (which was about to happen). I suggested she get some of the buckets we had around to catch rain water (when we had any) and that maybe she could cut back on the watering a bit.

The next thing I knew she had every pail, bucket, dishpan, trashcan etc. lined up on the deck where the water runs off the roof ready to catch rain water. The next phase of the project was to take old towels and cut them up to make tops for all of these containers to filter the water. Lord only knows we do not want to water OUR plants with dirty water!!! After she cut the towels to fit, she took green yard and went around and around the filter to keep it tied on the container.

Then came the rain. She was thrilled that she was ready! The next phase was that she had to go out there and take water from one container to another to fill up the big ones and get the smaller ones ready for the next rain. Of course, if she determined that the filters were too dirty, they would have to be washed before she could possibly tie them to the top of the container. In addition, if the container itself looked dirty it would have to be scrubbed out as well.

Mother is basically in her electric chair so you can imagine this is quite a difficult process for her. Fortunately, we have some WONDERFUL ladies that stay with her that put up with all of this nonsense and help her to get the projects done. You can imagine with all of the bucket scrubbing and towel filter laundering that went on that we did not save much water!

This Spring I bought her 2 rain barrel which had mesh filters and chicken wire on top but nope, that wasn't good enough either, she had to make filters. I have seen some of my good towels cut in half tied to the top of a rain catching container. We thought last summer would probably be the last that she would even be interested in the projects but this has not been the case. She is raring to go and has already got 2 rain barrels filled and the other containers gathering water even now.

All of this brings her alot of joy and gives her purpose. Anyone with buckets or towels for filters that you'd like to donate to the cause-let me know.

Flashback - Wild ride at Walmart

My mother likes to get out - like we all do. Because of her mobility problems we seek out places that have motorized scooters so she can putter along and see what's going on in the world. Walmart is one place that we can generally get a scooter. Off we go to get groceries and Ma wanting to get some Christmas cards (although she had never sent the ones from the previous year). Each scooter works differently so it is difficult even for me to figure out exactly how it works let alone a person with some cognitive deficiencies.

Things start out OK with her following me up and down the grocery aisles. Then I look back and she's not there. I circle around the next aisle and up to the other end to look for her. Nowhere in sight. Like a mother who realizes her child is missing I quickly go to the head of the next aisle and look down to see her crashing into a display (fortunately nothing breakable). I leave my cart and run to where she is. Since she had not let loose of the hand grip (aka throttle) she was still moving forward. A man reached her before I could and grabbed her hand off the grip before she pushed the display completely over. When I got there an "mentioned" to her that she had run into the display she didn't even acknowledge that anything had happened.

I say, OK Ma, let's go back up here where I left my cart and go back to the aisles I missed. She starts following me. Seeing a family with several small children ahead of me I wanted to make sure she was right behind me. The next thing I know I see her out of the corner of my eye getting into the left hand side of the aisle instead of staying behind me. She is going full speed ahead. I had to jump out in front of the kids to keep them from being run over by Ma! I kept telling her to slow down but she was on auto pilot and I had to AGAIN remove her hands for the throttle.

By this point I was ready to leave Walmart! I had just another couple of things I really needed to get so I took her out into the center aisle and told her to stay right there, I was just going to run get 2 more things and then we would be ready to go. She said OK. I went as fast as I could,grabbed the couple of items and headed for where I had left her. You KNOW she was not there. I looked in all directions and saw no sign of my mother in her purple coat.

I didn't really know which direction to go and in parent mode again I just picked a direction and hit the floor running. I left my cart to make it easier. I passed an older employee and asked if he had seen an elderly lady in a purple coat go by on a scooter. He said yes-she went that way - pointing to the other side of the store.

When I finally caught up with her she was circling the toy aisles at break neck speed. Mind you, it is Christmas time and the aisles are full of kids! I don't know how many times I had to excuse her,apologize that she was in the way of the kids trying to look at the toys and keep her from hitting people and merchandise.

I was tempted to go to the hardware department and purchase some rope to tie to the scooter to keep her with me. I think I would have had better luck getting a 2 year old to stay with me than she did that day.

When I declared our Walmart time over and that we were heading to the check out she remembered the Christmas cards she wanted. Off to the boxed card aisle we go for AT LEAST an hour of me handing her every darn box of card they had and having her look it over , open it up unless it was sealed, me trying to explain that the outside of the box showed what it said inside and there was no need to open the boxes and get the cards falling out of the boxes etc. She couldn't be specific on what kind of cards she wanted. I asked - religious? She didn't know. How about something with Santa? No, she didn't want that (until a few minutes later when she decided to look at it anyhow). When all was said and done she must have had 25 boxes of cards in the basket that she couldn't decide from. I basically just picked 2 boxes and told her I thought those were the very best that Walmart had to offer and that I was sure everyone would like the cards. They are still in the drawer a year an a half later.

That was the last time I took her to Walmart!

Flashback-Who are you?

A couple of years ago we had a woman that stayed with my mother during the day. Ma was having alot of paranoid thoughts and was asking Darlene alot of questions about me and our family. What it came down to was she didn't know that I was her daughter. When Darlene told me about the questions I gave Ma a notebook and told her that when she had and questions come to mind during the day when I was gone that she could have Darlene write down the questions and when I got home we would go over the questions.

One night I got the notebook and sat down with her to go over the questions. Her first question was what had happened to her husband. My dad died in 1979. She said she knew he had been in the war but she didn't think he had died in the war. While she was talking to me about this she referred to my father by his first name instead of saying what happened to Dad? I told her that he did not die in the war although he did get injured in the war. The conversation went on with me laying out the events of the day that my dad died. She had been at the hair dresser when I got a call from my brother that dad wasn't doing well. He had been told he had an abdominal aneurysm a few weeks prior and by the symptoms that my brother described I was sure that it had ruptured. He called 911 and I started trying to get my mom at the hair dresser. We ended up picking her up halfway through getting her hair permed to take her to the ER where my father died.

As I told her the details she seemed to remember it - or at least said she did.

Another question was - "where am I?" . I asked her exactly what she meant. She couldn't really say so I asked her if she meant the city/state or my house. She said all of it. So I explained to her that she was at our home and told her the name of the town and state. She nodded but then asked why she was at my home. I told her that my husband and I had brought her to live with us because she needed some help. Then she wanted to know who I was. I told her I was her daughter.

My brother and I were adopted and fortunately for me I had some details since mine had been a private adoption. When I told her I was her daughter she looked like she didn't believe me. She said that she remembered a dark haired baby but that she didn't remember me. I told her that I was the dark haired baby but that I was all grown up now. She said that wasn't possible because she didn't have any papers. I assumed she meant adoption papers. I assured her that she did have papers but that she didn't have them here with her. I asked if she remembered Emily who was my birth mother. I reviewed the scenario of why Emily gave me up for adoption. It seemed to ring a bell but she still seemed a bit skeptical.

I explained that since I am her daughter that my husband and I wanted her to come stay with us so we could help her. Additional questions she asked revealed that she thought she was at some sort of facility like a nursing home and that there were other people living here. She would hear them upstairs although the upstairs was just storage. She would tell stories of the others using her bathroom (no one used her bathroom). She even insisted on having her shower cap labeled with her name so no one else would use it.

She frequently asked me who was in the room across from her. I showed her many times that it was just a guest room and that no one actually stayed there except when company came. She told Darlene that she was afraid my "other mother" was going to come and stay in that room and that there would be competition between them. It was awful to think that after 50+ years she still had those fears.

How it All Began

My mom is 84 years old. She is a retired nurse and has been a widow since 1979. She never even had a date after my dad died. In her past life she owned her own nursing home, worked as a nurse in many settings including post partum and new born nursery. She dearly loved those babies! When I had my last baby (30+ years ago), I delivered at the hospital my mom worked at and she was able to give my baby girl her first bath.

Over the years Ma developed severe arthritis - osteo, rheumatoid and psoriatic so she ended up retiring a bit early. She enjoyed some traveling with a friend and spent alot of time with my brothers family as well as my own.

I left our home in Syracuse New York to seek sun and sand in Myrtle Beach SC and Ma started visiting in the winters and as her mobility deteriorated she spent longer here during the winter. Things started getting a bit rough when she would go home. She experienced alot of falls and started getting confused about her medicines and quite paranoid at times about anyone trying to help her with those medications. When she was with us she started experiencing a serious decrease in her mobility and wasn't even able to transfer herself from the bed to the bedside commode.

Knee replacements had been discussed with her for years but she said she didn't want to have surgery. To make a long story short, I convinced her to see an orthopedic surgeon here and basically she realized she was either going to be bedbound or get new knees. In the summer of 2005 she had bilateral knee replacements.

During her recovery she had alot of hallucinations, both auditory and visual and would call from the hospital and rehab to tell me bizarre stories of things that were going on. One night it was that the room across the hall was hosting a "Black Muslim" wedding. I tried to make light of it and said " and they didn't even invite us!" She was very upset by it, said that people were running up and down the halls and she was scared and wanted me to come get her. The hospital she was in is probably one of the most quiet and peaceful hospitals I have ever been in. They only do orthopedics, the halls are carpeted and they don't do overhead paging so I saw it as a lovely place if you had to be in the hospital.

Another night she called and said I had to get her out of the crazy place right now! I asked what was going on ( I hadn't been gone from there 30 minutes) and she said a baby had been born and there was alot of crazy stuff going on. I said - " a baby was born up there on your floor?" She said " Yes, that's what I'm telling you!" I said " well where did the baby come from" She said " It's mother". I said, " I mean, they don't even deliver babies at that hospital". She said " I know it, that's why it's so crazy and I need to get out of here!".

I attributed all of this to the stress of the surgery and medications that they had her on and assumed it would pass. I am a nurse myself and have seen patients- including myself - act pretty bizarre due to these factors.

When she got to the rehab (we used that term instead of nursing home) she continued with some of the same types of tales. She also was very paranoid about medications that were given to her and at times appeared almost unconscious when they attempted to get her up to go to physical therapy etc.

During this time I spoke with a hospitalist about her progress and he said- kind of as an aside that she had dementia. I told him that since he had only just met her, that she was a 81 year old woman recovering from bilateral knee replacement, that I didn't think it was the time to be making such a diagnosis. He basically said I could accept it or not but that his guess was that she had organic brain syndrome and dementia, possibly exacerbated by many years on narcotic pain relievers and the recent stress of the surgery.

Looking back, of course I could see many of the signs of dementia that I had attributed to other causes.

Prior to her surgery it had pretty much been decided that she would be with us full time. We were having a house built at the time and designed her bedroom and bathroom to make it easier for her to manage with a motorized chair or walker.

I feel that she made a good recovery from the surgery. She was able to use her walker and sometimes a cane. She stayed alone during the day while I worked and operated my business. She did laundry and dishes and enjoyed feeling that she was helping.

During this time, more bizarre behaviors took place. One evening Ma and I sat down to eat supper and I got up from the table to get something and when I came back she had a mouthful of something and was chewing to beat the band. The food we were having didn't really require all that chewing so I thought it was strange. My mom always drinks hot tea and has a little tea bag holder that the tea bag goes on after she takes it out of the cup. The thought flashed across my mind wondering if she had the tea bag in her mouth. I looked down at the tea bag holder and it was empty. I said -"MA! Spit out what's in your mouth!" and held up a napkin. She spit out the teabag!! She never questioned why I had told her to spit out what was in her mouth which was really odd and when I told her she had been chewing on a tea bag she really just kind of shrugged and started eating her supper!!

After that I got her into her primary care physician (after sending him a note about some of these strange behaviors) and he did a MMSE (mini mental status exam) on her. I didn't think she did too bad, all things considered but he very calmly and gently told her that she had dementia and that the most common type was Alzheimer's disease and he believed that's what she had. He sat quietly for a few minutes and then asked her how she felt about what he had told her. She said she didn't like the sound of it and after we left there she never mentioned anything about it. I later took her to a neurologist whose conclusion was the same.

So, that was the beginning of the journey. My intention is to blog as therapy for myself in coping with the situation, share information that I have found helpful and record some of the hilarious, heartbreaking and hair raising things that happen around here. I welcome your visits! Feel free to comment and share your own experiences in caring for a loved one with this awful disease. We can all learn from each other.