On Sunday, February 19, 2012 mom was finally at peace. She left quietly in her sleep at 6:10 a.m. I later learned from her sister Josie that Cosme (their mother and my grandmother) died 20 years ago on February 21 at the age of 92, same as mom. ???????
February 17th
Mom had her x-rays this afternoon, but we don't know the results yet. Mom's condition continued to worsen as the day progressed so her nurse came to assess her needs. Mom is totally unresponsive and is unaware of her surroundings. Due to her sudden almost total decline and increased pain she is not expected to improve.
I made the decision to allow Hospice of the Valley to move her to one of their facilities. We visited and found that she is in a home-like atmosphere, in a private room and surrounded by caring and accommodating nurses and assistants. She is in her nylon pjs, sockies and sleeping peacefully on her own pillow. I would want the same for myself if conditions were reversed.
I will let you know the minute her condition changes or I know the results of her x-rays.
The End Closing In
Mom's condition has taken a very quick downward step today. She woke up at 4 am complaining of intense pain. She touches her abdomen where it hurts and just really gets distressed with the pain. I only had Tylenol and that didn't take even an edge off the pain. I called Hospice and we worked through several things to make her more comfortable. At 6:30 or so I called again and they sent a nurse.
Together we made it until a nurse on call came by at 8. Mom checked out normal in every way except for her pain. A call to her regular nurse who came by at 10:30 and a doctor consult brought on Morphine. I am giving her small doses of morphine every hour until we know how she will react to it and how much is needed and how often to control the pain. She is refusing food except for about 4 tiny spoons of ice cream. She is spitting out the nuts so you know how bad it must be for her. It is after 9pm and I gave her a dose before her hour was up as she was in pain again. I have orders that her dose is small so I can give her more when she needs it. She is still uncomfortable so I'm sure she needs a higher dose since she isn't making it an hour pain free.
Tomorrow Hospice is sending a van or whatever to administer an x-ray. Her doctor wants to know exactly what is going on in her abdomen area so that we can adjust treatment and care. Even though we will not be on a treatment plan we can at least have some answers on how to make her less agitated and reduce her pain.
Her situation never looked good, but now it is definitely bad.
February Mom Is More Difficult and I'm Soooo Tired
2/3/2012
I have several questions and puzzling observations that only females at the age of motherhood or adulthood can understand. I know in theory why animals (mostly the females) eat their young and that males kill the young if they want to mate and the young postpone that activity. There are other reasons but those are not the object of my writing. After taking care of mom for over three years and especially now that she has very depressing needs I'm convinced more females need to eat their young so that in the ensuing years the offspring does not have to endure their decline. It would be a good thing (as Martha Stewart says) if mom only hallucinated seeing Riley, Suzy, and birds. She is seeing two things, persons maybe, at her window. I had to wash the sheets, the two mattress covers, pjs, underwear, etc. starting at 7 am. She is dry, fed, warm and the bell ringing has begun. Initially there were four things she wanted, but could only remember two. "Why do my hands hurt? Sometimes they hurt and other times they do not." Arthritis. "What is over by the window that I want?" Is it the juice, water, stuffed frog, candy or your oxygen machine? "No." Do you want the window shades up or down? "No." Do you want the water? "No" and spits it out.
Dang! I can handle dealing with the pee and the shit, but I urp when it comes to spit. Spit, it's the horrid stuff that things with testicles barf out of their mouths. They get out of the car, spit, they leave a building, spit, and when they stand around talking to each other, they spit. What is with this spit thing? How come I have never seen a female spit? The only time a female spits is when the thing with testicles urges her on with too much alcohol and she overflows. Sorry I digress.
How do the mothers of our species deal with babies that refuse food, cry, pee and shit? How come we don't eat more of them? Since I have a being that has digressed to the baby stage all you future mothers and ex mothers (is there such a thing?) have my total respect. I respected and admired you before, but now faced with all this pee and shit and washing of sheets, plus the drying and folding and then starting all over again, I give you a crown. I'm exhausted trying to figure out what she wants. She has rung the bell 7 times (I'm not counting) and when I get there she doesn't remember why she rang it! This sounds exactly like when a baby cries. How the hell do you get it to quit? It's dry and fed what more does it want? Hold it? Yeah, like I'm going to pick up a squirming, spiting, arm waving, 80 pound being that isn't satisfied with anything I try? I'm sorry. I'm calling mom a being because "she" isn't there. I'm not going to insult the past her by calling the present her, mom. This is some sort of alien being that is inhabiting what is left of her body.
To all of you that have children or plan to have children, I give you my blessings and best wishes. To all of you that still have parents and relatives that may need you in the future, I give you my sympathy. This is the damn hardest thing to watch, do and endure.
If I lost a train of thought or digressed, I had to answer to 5 bell ringing episodes before I could finish this revelation. She is now at the point that she rings it less than 5 minutes after I leave the room. This is going to be a long, long day.
2/11/2012
I stopped writing for a bit because I realized that I was not going to post the truth anymore. So I will wait until I'm asked before giving this part of mom and myself away. It's like in all communication and art some people get it and others don't and it's gotten too hard to explain.
Taking care of one's parent especially one's mother is hell. There is no other way to describe it. I'm sure other caregivers don't feel the way I do. This is hard work. There is nothing more painful than watching your parent devolve unless it is taking care of your parent as she devolves. There comes a point when you have to let them go and not view them as your parent. How can this "thing" be my mom? She was so proud and careful about her appearance and her environment. She liked pretty clothes and to go out in public. She no longer can do any of her favorite activities. All she can do is lay in bed, sit in the chair in the hall or sit on the toilet.
She is helpless. She must be fed, bathed and watched as if she were a baby. She is baby like, but she won't grow up or improve. She will only continue to get more helpless and dependent. No one tells you how hard this journey will be. You read books and articles and speak with hospice workers and until you are right smack in the middle of it you have no idea. There is no amount of information that prepares you for the reality of taking care of someone with dementia.
Mom does have moments of lucidity when she wishes for the end. She is aware of her condition and hates it. She realizes the degree of her helplessness and wants it to go away.
She is refusing to drink her favorite juice, no longer likes the water and doesn't know what to ask for anymore. Her frail hands grasp the air in search of the words to express herself and she cannot grasp them. It is so hard not to get frustrated with her because she has had you up since 2:30 am with false demands. She rings her bell and then doesn't know what she wants. Especially in the evenings when she gets "sundowner" she becomes the most demanding. You are going to her room every 5010 minutes to see what she needs and she doesn't know either, but keeps ringing.
There is no way to satisfy or placate her. She is in another place and wants you to stand and watch her. I don't want to watch her anymore. I get upset with myself because I don't have the heart to do it anymore. Being in the middle of this death watch is a torment. I don't know how other people do it. Some days I can fly through it and not feel very much. Other days I'm whipped, exhausted dealing with her and feel trapped between her needs, my husbands' and mine.
I'm going to ask for those five days when I see Sara on Wednesday. Even if we do not go anywhere, at least I can relax the night and spend the day without worrying about her care. I know she will be afraid in a strange place, but what else can I do. Remain here with her when I need so much to get away. I may speak with Judy, but I really hate to do that. She has enough on her plate without me adding this new task. Sure mom might feel more comfortable with her but at what cost? The will probably drug her up enough so that she sleeps through the whole thing. When I return will it be worse or better? No way to know until it happens. Kind of like everything else in life, there is no true handbook that will lead you through life. I guess a surprise is better than knowledge. Knowing is worse. What's the saying? Ignorance is bliss. You betcha.
I'm going to take a pill or two, one for pain and one for sinus and maybe go off to sleep. It's 6 am now and the whole trial will start again.
My Two Cranky January 2012 Posts
1/4/2012
I think I'm losing it. I'm so tired of being sensitive to medication. I'm convinced that if I ever get seriously ill the medication to cure me will kill me.
I was having extreme pain whenever my esophagus decided to spasm, which it did at least once a meal. I consulted a gastroenterologist, which by the way, had excellent listening skills, but lousy communication abilities. I had that thing where they put a scope down your throat to check out the scenery. I guess I didn't have anything exciting so all I got after this procedure was a "looks fine" and a prescription for a stomach acid reducer. He prescribed Nexium, which Lynn said has a boat load of side effects and to request Paxium. It took about 10 days to get it switched. It was like impossible to get them to comply.
My word, the dang thing works like a dream (nightmare). I am now an angry, irritated caregiver with no stomach issues. I'm cranky like when you haven't eaten in 6 hours. The issue buttons that were mostly invisible can now be played as if they were bulls eye targets. Not that my mind was ever my own, but now it's totally out of my control. It thinks what it wants, which is usually the negative side of anything and anyone. It's like I have a comedian in there and all the jokes are on her.
Yesterday was the last straw. Mom's elevator was hitting the 11th floor and was more than her past demanding self. She got up late and said it was because "nobody" woke her. Her bra was not hooked right because "nobody" was there to do it for her. She didn't eat her toast because "somebody" took too long to give it to her and it got soggy. Her coffee was bitter, but no, she did not want more sugar or milk. She gave "somebody" a lot of flack because she didn't want to take her pills since they weren't working. She didn't like the picture in her room anymore because "somebody" else put it there. She wanted me to move one of her mirrors because she couldn't see herself ( I can't see why because if I looked like that I'd break every mirror in the house) and "somebody" else put it too high. She wanted two of her vases moved because "somebody" put them in the wrong position. She wanted a purse (she gave away about 3 months ago) back because "somebody" moved it. She wanted her sewing boxes moved from where she had them because "nobody" would help her sew.
How she lived after this God only knows. I gave as good as I got then she got quiet and said "somebody" is in a bad mood and she doesn't know why "somebody" is picking on her.
She wanted a hamburger for dinner and didn't want to bother me so would I please go get her one and one for "everybody". She did not eat that damn hamburger because it was cold, I reheated it (not the bun or the lettuce), then it was soggy and if that wasn't enough it was greasy. Lynn and I ate something besides a hamburger. She did stop complaining after Lynn gave her a dirty look. I finally got her to go to bed and get settled down so that we could watch TV. Right at the most critical part of the show "Al...ice, Alll...ice, Allllll...ice." I got up to see what she needed, she wanted "somebody" to cut her toe nail. I cut it, then it was not short enough, then I cut it again and it was still not short enough. Can you believe she still has that toe? Then she found another toe nail that was too long and then the curtain went up on another cut it, not short enough act. When I told her that I was not going to cut it any shorter or else it would bleed she got all huffy, pulled away and started the "go away, turned face, aggrieved" act. Yes, she still lives.
I couldn't sleep last night because of the anger and frustration to say nothing about her moans, Lynn's snoring and the cat's yowling because her bedroom light was on.
I did not take my pills today. I don't think they would qualify as a excuse to murder.
1/28/2012
Things around here have been changing quite rapidly and not for the better. Last week was a trial and I'm very glad that it's over and I hope that things settle down to a manageable dullness.
My precious, loud, demanding, loveable gato went to heaven last week. He must have had a stroke late Tuesday. I watched him wobble and stumble around all day Wednesday. He lost almost all control of his rear legs. He was confused and followed me around from room to room even though he could barely walk. His vet and I agreed that we would give him until Thursday to use one of his nine lives and regain some of his vitality. It was not to be. We decided that it was his time to go to kitty heaven and sport around with Wuk and Tucker. Talk about pain. We had Riley 17 years and even though he's gone I keep stopping by the laundry room thinking I have to strain his box and I keep wanting to buy cat food when I'm at the grocery store.
When I went to see Dr. Sullivan we both decided that I could no longer take care of mom by myself. I can no longer leave her alone. She is having hallucinations and an inability to separate morning from evening. She is unable to leave the house. She cannot dress herself, walk or eat unassisted. She has almost lost her ability to control her bodily functions. She has "accidents" about every other day. On Wednesday she took off her pjs and hung them on a chair to dry (so that I wouldn't know she'd wet them) and then tried to dress herself with a clean set of pjs and fell. She did not break any bones she just got a bit bruised and shaken up. I may not exercise, but I can bench press 80 pounds as I found out. Luckily it was the day her new doctor from Hospice was scheduled to visit. All that we could do to make it better for her was to give her Tylenol. Anything stronger would drug her out and make her more likely to fall again.
Since her fall she has increased trouble swallowing. She is eating even less now than before, but if she tries to eat more than a few bites she hurls. The osteoporosis has continued to curve her spine so her organs are constricted and her ribs have spread further. I'm not sure what is going on with this swallowing thing, but her nurse will call and see her on Monday instead of the scheduled Wednesday.
One bright spot is that Lynn is now officially retired, Thursday was his last day. He continues to be a saint and help out as much as he can, just don't tell him I said so or his head will swell and get stuck in the door frame. We hope to schedule a short trip in late Feb or early March. Hospice will take care of mom for 5 days. They will move her to a home and then bring her back when we return. As long as her caregiver reminds her constantly that we are on vacation and that she will be coming back here she should be okay (or not).
Thank you for your support and encouragement. This has been and continues to be quite the challenge and thankfully I've also been given the strength to move through it.
1/31/2012
Only my women friends are getting this notice. The guys haven't responded to my last message so they are going to miss this one.
Mom's hallucinations started this morning at 2:30 am. It seems my "neighbors" were having a party and the music was too loud. She heard laughing and said that they were singing. She did not like their music. She wanted me to go and ask them to change the records and play some nice flamingo music. (I didn't know she even knew what flamingo music sounds like!) I agreed to talk to them so that she would go back to sleep. After about 10 minutes she called me back up again to thank me for having them change the music. It sounded so much better now.
At 6:30 am she got up, like a 3 year old on crack. She wanted to know what to wear to the wedding. (What the f?) What wedding, ma? The big one, Alice is getting married and she has to get ready. She also wanted to know if the viscochos were packed. (Viscochos are Mexican wedding cookies which mom used to make for all fancy occasions.) I told her the wedding was cancelled and that she didn't have to worry about what to wear. That was okay with her as long as the coffee was ready. She had breakfast and insisted she could get ready by herself. (that was not to be) What followed wasn't funny so I won't bore you with it.
At 3:10 pm after her jello she got quite upset. Why? Because her grandchildren were running up and down the hall making noise. Not only were they making noise, they smelled bad. She wanted me to give them a bath. I went along and said I would bathe them and change their clothes. She then sat in the hall in her chair and watched them play Bingo. Geeb won the game and got a prize.
It isn't over yet. It is now 6:00 pm and we had Riley playing with a ball in my bedroom. She can see into our room from her chair in the hall and it seems Riley was under the dresser playing with his tail. She kept calling me over and over and over to come see him. She talked more to him today than the whole time he was alive. The cat then changed from Riley to a very fluffy black and white cat (that could be Suzy our childhood cat). She sat there and talked to that cat until it went to sleep. I finally got her fed and into bed and now she has a bird in her room. It's building a nest on her bookcase behind the clock. She calls me every time it tweets. It has been singing to her for about 20 minutes now. (she calls me every 5 min to tell me about it and have me hear it) I told her not to worry and let it build the nest and maybe it would sing to her tomorrow. (god I hope not)
It has been one really challenging day. Rather than try to explain that there is no music, no wedding, no cats, no bird--I've just gone along with her. I think that is the easiest for both of us. Her constant bell ringing would drive me to drink if I drank. (I got her a cow bell about a year ago so that she could ring it when she needed me. I did this since I can't always hear her calling Al.l.l...ice.) Instead I've eaten a whole Hershey's Valentine Marshmallow Heart (King size). Now I'm a 60 year old on a chocolate crack high.
Mom's 3rd Anniversary with us and December Dramas
10-16-2011
Next month will be the third anniversary of mom’s move to AZ. It has not been easy having her live with me and Lynn, but it has given me a whole new outlook on how to care for the elderly with dementia. Since I live with her many times I do not notice many of the subtle and not so subtle changes she is undergoing.
I do not want to be like the “boy who cried wolf”, but it is time to let you know that day by day she is getting weaker, more afraid to walk unassisted, and unable to taste her food. The only spice she can taste is salt and she salts her food 4 or 5 times during the meal. She can’t remember what food tastes like so I have to show her the dish so she can decide whether she wants Jell-O or ice cream. She can’t even taste her loved Dr. Pepper anymore and pushes it away because she says it’s tasteless.
She used to love to go shopping and now complains that it is too much trouble to get dressed. She still does want her hair and nails professionally done. These are just a few of the many changes she is undergoing. Her advanced dementia and weakness have made aging wretched for her. She is no longer the “granny” we all knew.
Riel is still on task trying to get her house sold. We have a realtor, have done minor repairs, yet it sits. He is also working to get her property taxes reduced since she is due an exemption due to age.
On another topic, I spoke with my sister Laura and she also is experiencing dementia. She can’t taste her food and since she doesn’t get hungry, she forgets to eat. She is slogging it out alone. If you have time please give her a regular call to keep her connected. She is so isolated in El Paso
Thank you for supporting us during this journey.
12-30-2011
Riley has now become an official guard cat. He makes sure that the house is quiet and that nothing is moving about except him.
Mom has begun to talk in her sleep. Sometimes she just talks and other times she shouts. At 12:30 pm last night she was shouting so loud that I could hear her through my ear plugs and Riley was howling too. He got on the bed, sat on my chest and yowled. It is very hard to sleep through that. I got up and listened to mom as she shouted and argued with someone while she slept. Since I was only hearing one side of the conversation it was hard to understand. She kept talking about a green taxi, packing and something about food. I didn't wake her as that would be worse. So I fed Riley, patted him and he stopped yowling.
At 4:30 am Riley was on my chest very carefully walking across it making sure to step on my nipples. He seems to know that gets an instant response. After knocking him off I suddenly could smell something burned. Got my butt out of bed pretty fast to find mom in the kitchen. She was warming (burning) a tortilla on top of the toaster. She had put left over refried beans and shrimp on it. She had also cut up a tomato. She would not talk to me and when I touched her shoulder she shook it off. She put her nose in the air and would not respond. I kept talking to her and she finally said that someone kept turning on and off the light in her room. She also said that someone had been beating her. I explained that no one was in the house but me and Lynn and that we were asleep so no one was beating her. She insisted that she was beaten and only got over it when I asked her to show me where the bruises and cuts were and she couldn't.
Then comes the cool part. I waited until she had finished her burnt and cold meal and took her to her room. Her room was a mess. The bed clothes were off and her clothes were everywhere. I asked her what that was about and she said: " I had to pack because Gabby has to be at work tomorrow. He and Jeanie are taking me home." I asked her if she was sure it was Gabby and Jean and she said yes. They were also taking her to Josie's house. I talked her through that and she finally remembered that Gabby was in Austin and not in El Paso anymore. She lay down and while I picked up the room she came alert and told me that Josie had fixed her a room at her house and that she had fixed it exactly like the one she has here. I gave up and asked her about the green taxi and she told me all about it and that it took her to Josie's house. The rest of the conversation was too twisted for me to repeat.
Every night it is something. Either she is shouting in her sleep or getting up and sitting in the hall talking to who knows who. Riley makes sure I know about it if I'm lucky enough to sleep through it. He thinks if she has him awake, I should be awake too. It is really quite a circus day and night around here and it would be very funny if I weren't so sleep deprived. (By the way, Lynn sleeps through the whole thing even with Riley yowling.)
July and August More of the Same
7/15/2011
It’s been a while since I last updated you on mom. She is still doing fine as far as her blood pressure goes. She is sleeping more and more and still refuses to read, sit in a chair, or watch TV. She still can’t taste or smell her food so she is salting the heck out of everything she eats (except ice cream). She is getting more frail and has difficulty walking unassisted. She refuses to use a cane or a walker so she goes from furniture to furniture or I hold her hand. I think her ability to remember from day to day is about 20%. She as acquired strong coping skills so her memory loss is not noticed unless you live with her day to day. She gets ideas yet she does not have the ability to do anything she wants. She tires more easily now because of all the bed rest. I am at a loss as to how to make her sit instead of lay. The more she stays in bed the weaker she gets and the weaker she gets the more frustrated she gets that she can’t do anything. Sigh.
Her home in El Paso Virginia Virginia
Geeb is checking with a real estate agent that will evaluate the house and its condition and give us a relative value on it. I appreciate his help and advice. He explained to me how hard it is to sell to family or friends and each wants as good a price as possible. Basically I just want the house sold. Mom is not going into a nursing home so any funds will go to her care if and when Lynn and I can get a vacation. I have not had the energy to keep on top of the house and selling it and apparently I depended on people that I thought I could trust. At least the house is empty and mom’s belongings given to family and friends. I will let you know if there are any changes in the house selling status.
8/30/2011
I’ve procrastinated long enough. I have been waiting to see if I could report anything positive and it just has not turned out that way.
Mom is now living in another reality at least 90% of the time. She is either having very vivid dreams or some part of her memory process is putting pieces of the past and present together and creating something very real only to her. After hearing her adventures I have trouble keeping my world on the ground.
In the past weeks she has been visited (in her mind) by Nora and her husband. They came to visit while I was out and they ate all the leftovers in the refrigerator and left just before I got home. They left because there was no food left. Cyndi (in her mind) was here and was pregnant and asking us to make her baby blankets. Greg and Helen came by and were not married yet and were inviting her to their wedding. The ladies who come to clean the house were here and stole a piece of her jewelry and some of her clothes. The most disturbing visit was this morning at 3:30 I found her in the living room looking out the window waiting for Jeanie to return. It seems “Jeanie” was here and spoke with her and told her all about Gabby and the family. She then left and promised to be right back so mother was waiting for her.
These are just a few of what I call her “dreams”. Today she said a young boy was here and she had to cut his hair because he had chewing gum stuck in it. These episodes are very real to her and all I keep telling her is that she has just had a dream. I know she would not understand any other explanation. She is weaker now and the day is not far when I will have to feed her. She has trouble getting the spoon or fork to her mouth. She lost her balance and slipped the other day and thank God she did not break anything. She did get a small bruise on her elbow and a scrape on her back. I had to feed her while she was in bed and give her massages whenever she remembered.
One positive thing is Riley (my cat) knows that she should not be up and around at night. He gets on the bed and yowls at me to get up and after I do I find mom up and about waiting for one person or another to come by. Lynn El Paso
I apologize to my friends and family for not e-mailing, calling, etc. Most of the time I’m just pooped and other times I just don’t want to be a downer. I think of you often and wish we could visit like we did before, but that has to wait. Thank you for your support and for calling to speak with Mom when you have a chance.
A special thanks to Geeb for taking control of selling mom’s house. He has been a god-send locating a realtor and coordinating the repairs at the house. Hopefully the house will sell and we’ll be able to have Susan (Mom’s care giver on Thursdays) take care of Mom more often. She is a marvel in understanding Mom’s picky ways.
December 2010 Through March 2011 Updates
12/14/2010
Thanks to Geeb we had a wonderfully relaxing time on our short cruise. Our stays in Mazatlan , Puerto Vallarta and Cabo were just a taste of Mexico Holland
After a week of not seeing Mom I can definitely see that she is continuing to fade. I can’t say the medications are not working since we do not know if her condition would be worse without them. As Geeb remarked she is definitely “happiness and pleasure adverse”. I can’t recall that Mom was never satisfied or even content when younger and now a smile from her is a rarity. She is not in pain, she gets new clothing or jewelry more than twice a month, ice cream, manicures, hair styling, and pretty much anything she asks when she wants it so we know that she just isn’t going to be content no matter what. She had an echo cardiogram today and she still has fluid around her heart, but it has not decreased or increased. She wants her energy and “concentration” back but there is no pill for that so we truck on.
Again, huge thanks go to Geeb for letting us get away. There is nothing like a vacation to renew one’s batteries of patience.
Christmas cards will hit the post soon and I will send another note with more details about our trip and possibly pictures since you all know how picture adverse I am.
Take care and don’t let the bed bugs bite,
3/27/2011
It is time for another update on Granny/Emma’s condition. It is very hard for me to describe how her mental and physical capacities continue to deteriorate. She continues to lose weight. She weighs 76 pounds. Her blood pressure is completely under control and is normal. Her heart is functioning normally. Everything else is what she would call kaput. When she is not at home I have to hold her hand when she walks or I have to put her in her wheel chair. She has trouble breathing due to her advanced osteoporosis. She cannot taste or smell her food anymore. She talks and shouts in her sleep.
Mom’s ability to retain anything in her short term memory is pretty much gone. She can remember how to do certain simple tasks yet cannot remember to brush her teeth. I could list everything she is forgotten how to do, but I think just telling you that her present memory and parts of her past memory are now gone. She is seeing other people (that do not in reality exist) in our house. She continues to ask about her 12 year old daughter. After her nap she thinks it is morning and wants coffee and breakfast.
I encourage you to call her as often as you can because the day is coming when she will not remember you.
September Through November Updates
9/29/2010
Mom was on microdantin (anti-bacteria medication for the bladder) from Nov. to June. I took her off of it because she complained about her pills and it also had the side effect of making her sleepy and weak. Dang, she got something back about a week ago and has been in extreme pain since. She had an infection when I took her in to her urologist, yet when cultured, nothing grew. So we put her back on micro. She continued to be in pain so I took her back yesterday. Again, her urine is clear of infection, but I convinced the doctor to give us something else to see if it would stop the pain. He changed the medication and with just one pill I think it is working. She was fine yesterday and her elevator went to the top several times.
Late in the evening I found her crying and crying. She was upset because I wouldn’t take her to Laura’s house to see her daughter. She knew that school was starting soon and wanted to know if her daughter needed new clothes. She is convinced she has a younger daughter out there somewhere. When I talked her through that one then she wanted to know where the other man was. She is convinced that I was living with a different man that I sent away and that then Lynn showed up. That particular fantasy I cannot shake from her mind. She doesn’t know why I am doing this to her. I also keep hiding young girls in the house and making them sleep on the bathroom floor. I also keep trading out Lynn for the other one every other day or so.
My sister used to spend hours trying to talk sense into mom. My saying then is the same as now, “You can’t make sense out of nonsense no matter how hard you try.” I think I can take anything except the crying. Her telling me I’m fat and that she never expected me to get so fat comes a close second.
Thank goodness our family comes with staying power. I’ll make it through this because, well, I have to.
11/19/2010
I haven’t sent updates since Mom’s attitude and abilities were continuing to deteriorate very quickly. When I took her for her visit to the Neurologist and tried to get advice on how to better help her with her decreased energy and increased listlessness he prescribed Prozac. No way was I going to give her that drug because it added to her Namenda and Aricept would definitely completely incapacitate her. (According to Lynn who knows these things). So what to do? I had already begun to reduce one of her medications and was moving some from evening to morning and vice versa. Now what?
Judy came to the rescue. With her advice I called a nutritional adviser. I ordered the nutritional tonic and started her on one ounce a day. We also discussed possibly removing one of the medications if she responds to the tonic. The tonic had an immediate effect!!! She now is more alert and can carry on a conversation. She still is far from her old self, but a whole lot better. I am so relieved and thankful. I am realistic and know that this could be temporary or could just be my imagination, but I’ll take it.
Today she wanted her nose hair trimmed. She wanted to go have her hair dyed and styled. She also realized that it was Friday and that we could go have clam chowder. Her ability to make these determinations has me so relieved. I keep using that word because I guess I have been very un-relieved lately watching her struggle with her loses of memory. Every time she asks for her young daughter and wants to make sure I buy her a sweater and new shoes for school my heart aches.
So . . . . a huge thank you to Greg for offering to help, Geeb and Tiffany for coming to my rescue and staying with mom in December, and for Judy and her excellent advice. I don’t know what I would do without all of you and all the support you have given me especially this year. I’m making a detailed list of what mom prefers and her daily schedule to make things easier for Geeb and Tiffany, so for today LIFE IS GOOD.
August Decisions and Dentist Adventure
8/27/2010
Mom’s blood pressure finally is normal. It has been normal long enough for me to stop one of her blood pressure medications (with her cardiologist’s approval). Mom is now a bit more alert and she moves around a little bit faster. She also seems to comprehend what is said and join in on conversations. She still can’t remember squat most of the time, but at least I see some improvement. I take her out to lunch at least twice a week, grocery shopping and just errand running. She bought a new purse and doesn’t remember why, but heck that’s okay too.
I know I’ve put off going to El Paso El Paso Lynn El Paso
I know I’ve asked before BUT PLEASE SEND ME AN E-MAIL WITH YOUR REQUESTS OF KEEPSAKES. I would prefer to send them to you from there rather than cart them back. I don’t know if I’ll finish it all, but at least I will get as much done as possible.
Attn: Marfa and Tucson
I will let you all know the dates I’m there as soon as I round up all the loose ends here. I have to get someone to take care of mom while Lynn
9/3/2010
It’s time to share another fun filled adventure. This time it’s our visit this morning to Mom’s new dentist here in Phoenix El Paso
She had her cancer removed in March and I had hesitated to start a new dentist, what with all her other “stuff” teeth were not high on the necessary list. Well anyway, about a month ago she began to ask to see a dentist. She told me she had a tooth she wanted him to remove. When I asked her why she wanted it removed she would always reply the same way, “Because it has been bothering me for a long time”. I asked her if it hurt, no, does the gum bleed around it when you brush, no. Well, one day two weeks ago on the way home from seeing her cardiologist she asked again in a loud rather persistent tone, “when was I going to let her see a dentist!”? I immediately called my dentist and made an appointment. She sat there and glared at me because she had to wait two weeks before she could see him. Everyday since then she has asked me when she was going to see the dentist so he could pull out her tooth. I gave up explaining that he would not remove her tooth unless it was absolutely necessary. He would either do a root canal or a crown, but that dentists did not just routinely remove teeth.
Today was the dentist day. The dentist wanted to do a panoramic x-ray of her mouth. That didn’t work since she is short and cannot straighten her neck. The machine would have hit her shoulder and not gone around her face. They had to do individual x-rays of her mouth, about 8 or 9 of them. She got very cranky and didn’t know what the fuss was all about; after all she just wanted a tooth pulled. The x-rays showed extreme tartar growth between and at the base of her teeth. She had one growth of tartar on her back molar that was so large it looked like a small deformed tooth!!! Rather gross I would admit. The dentist would not have believed that she had seen a dentist and had her teeth cleaned 14 months ago if I had not said I was with her when she went.
To make a longer story short, one x-ray showed she had a broken tooth. The tooth she wanted pulled had broken almost totally off the root at the gum line. Without giving you the full gross details it was very clear on the x-ray that that tooth had been broken/cracked for a long, long time. She got half her wish. He removed the broken tooth off the root. He could not remove the root because it was deeply embedded and would require an oral surgeon to remove it. So mom is happy. I have trouble making her understand that the root is still in her mouth and that we have to have it removed. She doesn’t care. It doesn’t hurt anymore when she bites so she is content to leave the root where it is. The hygienist had to break the tartar off in 4 pieces to remove it and she also gave her an ultra sonic cleaning. The hygienist showed mom the chunks of tartar she had removed and mom was so proud. I’m not sure why she was proud, but that is the only way to describe her reaction. The dentist, hygienist and I all agreed that having her come in and have a quadrant deep cleaned every two weeks would be more than she (me, actually) could tolerate. We compromised and decided I’d take her back every 3 months and they would gradually get the remaining tartar removed and her gums healthy.
I had warned the dentist that mom always got what she wanted and after this episode he is a full believer. I brought her home, fed her and she went to sleep like a contented baby. She got up about 2 hours later and just wanted a drink of Dr. Pepper, no pain, no Tylenol. Go figure.
Truth is stranger than fiction, especially in our family.
June update and doctor visit results
6/2/2010
You are spared a long detailed saga. We have to go to the doctor in 15 minutes. The test results showed that mom had a pancreatic attack. She has high, very high levels of everything she shouldn’t. According to Dr. Sullivan most patients that suffer pancreatic illness are overweight men who drink heavily or it’s inherited. Great! More blood tests today to see if her liver and pancreas have begun to return to normal. She will have an abdominal ultrasound on Friday to assess the damage. Since mom has always complained to pain on her lower right side and her ?@#@$$% doctors in El Paso
She is still in pain but won’t go down.
Just goes to see, hell I don’t know what to see, but there we are.
6/18/2010
I wish that I could give you good news without a but. But here I go again. The mass in mom’s stomach is just fatty tissue. It does interfere with how much she can consume, but it is not life threatening.
The CT scan found that she has a lesion on her pancreas. She also has a lesion on her adrenal gland. Both of these conditions are fairly rare. Dr. Sullivan asked if he should go further into the pancreas issue which would involve a biopsy. The biopsy would be performed from her back and would be extremely painful. We also discussed what if anything could be done about the lesion on her adrenal gland. We discussed the pancreas biopsy and both agreed that she would not most likely benefit from the surgery and the stress of it would probably endanger her. More questions than answers and the only sure thing is to do nothing about these two things at this time.
The other thing found was that she has fluid in her pericardium and her heart is enlarged. The pericardium is the sack that surrounds the heart. Too much fluid in the pericardium would definitely interfere with her blood pressure and circulation and could also damage her already weakened heart. This issue will be discussed with her cardiologist. He also received a copy of her CT results. I will call Monday and make an appointment.
Mom is not in pain. Her only complaint continues to be her lack of short term memory. She is sleeping (she denies she is asleep) most of the day and part of the night. She is frail but has no problem making sure her needs are met. She wants a perm and that is easy enough to satisfy. I cannot take her grocery shopping anymore since she literally throws a tantrum now if she can’t get/buy everything she wants. I can still take her clothes shopping. She is so picky that we usually don’t find anything to please her. All she wants to eat are In and Out burgers and drink Dr. Pepper. I don’t feel comfortable leaving her alone more than 2 hours now. She is so disoriented that she panics and forgets to read the notes I leave her or reads them and thinks that they were written previously instead of currently. She can read and knows what she read, but will forget she read it and the circle starts again. She also cannot remember how to use a phone and that increases my anxiety when I leave her.
My plan to go to El Paso El Paso
I hate to share all this, but each of you has asked to know what is happening with Mom. Thank you again for your interest and concern and certainly for your encouragement. I appreciate you more than I can say.
April and Mental Capacity plus Home Care Decision
4/7/2010
I know I haven’t sent any updates lately. It is because Mom’s mental capacity continues to deteriorate so I don’t have positive news to report. I don’t know if it is more mini strokes or just the advance of Alzheimer’s. I take her out almost every day, but it is getting harder and harder because she wants to buy everything (food) she sees and doesn’t believe she already has it. She hasn’t thrown a full blown tantrum yet, but close. Her small Dr. Pepper cans have been discontinued at fry’s and it’s going to get ugly if I can’t find them. At this point she is refusing any other size. I won’t weigh you down with more details, but please continue to call and speak with her.
After interviewing the first home care company I decided not to enroll. Now after two weeks of hard thinking I have interviewed another representative of a company called Home Helpers. I was able to “connect” easier with Nicole Owens and, for some unknown reason, relaxed and decided the time has come. Home care is not cheap. Here are their prices: 4 hrs or more $21-25, 1.25-3 hrs $21-26, 12 hr. shifts $190, Continuous care $280 per day. Holiday rates are 1.5 times the regular rate. Nicole also explained that they are prepared for “emergency last minute” calls and are able to have someone here within an hour’s notice. This company does not have a 3 hour minimum as did the other. I can get them for a shorter time if needed.
I had hoped to avoid having to use an agency, but she has now reached the point that I cannot leave her alone even if she thinks I can. Since all home helpers are thoroughly investigated and bonded and covered by liability and workman’s compensation, they are the way to go. I have to be able to trust the person caring for mom and know they are qualified to handle anything that could come up. I hope that having someone else around her every other week for 3 hours or so will be a nice break for her. Her only outside contact is with you by phone. I also hope that it does not confuse her further. She still speaks in the plural: todos, la otra, ellos, la que me hiso. I remind her all day long that it is only me and Lynn and no one else.
I keep pushing the issue of her house out of my mind. I plan to get myself girded by June and get over there and clean it out and ready it for sale. I am also fairly sure that by June I will be able to leave mom for a week or so and get this done. Right now she would want to go with me and that would be a big mistake. On one of her good days it would be okay, but her good days are numbered and unpredictable. Selling her house will be a relief and will help pay for her care.
I was told about a VA Aid and Attendance Benefit that may pay benefits for Mom’s care. The documents and information I have to supply is daunting. I have to find stuff like mom’s marriage certificate and dad’s Original military discharge papers plus more and more stuff. Nothing like providing a benefit and requiring one to supply documents 30 or more years old.
5/18/2010
I know, I know, I haven’t written or kept in touch lately. Life is getting way more difficult and challenging and I hate to communicate when I don’t have anything positive to report.
Mom is losing touch with reality a bit more every day. I had to write to you today when I realized waiting was not going to make the news any better. Today she asked me what the plans for mom were. I told her she was mom. Then she asked if I was Alice or the other one. This is not a game with her. She actually doesn’t know who I am all the time and she definitely wants Lynn
I could continue, but I think you can understand her mental state. Her last appointment with her Cardio revealed that she now has normal blood pressure and her heart is beating like the band. All of her other systems are working fine and all she can focus on right now is that her ankles swell and her upper lip (where her cancer was removed) hurts when she bites hard food or brushes her teeth. She will be NINETY in July. Laura came for a short visit and at almost 75 she shows similar signs as mom, though not as debilitating. She is not very healthy physically, but I think I can only handle one at a time.
It is a roller coaster ride everyday. She drifts in and out of reality and is sometimes childlike and other times very angry. It is what it is.
I haven’t been back to the Neurologist or researched further into places where she will get better care when the time comes. I dread going to El Paso
The love of my life (pet wise that is) Riley has refused to eat. I’ve tried everything! He went from a 3-4 can a day cat to three licks and stops. His blood work is perfect and he has no signs of any illness. This means I have to begin to force feed him to re-awake his appetite. I pick up the food syringe today and special food that should make him eat on his own again. I hate having to do that, but cats are different than any other animal. If they don’t eat their liver shuts down and then they slowly . . . ya know. I can’t even write it.
I have hopes that the next time I write, I can be more upbeat and positive. I really feel that way deep inside, it’s just hiding right now.
March update and reprint of the Art of Pickiness
3/2/2010
I’ve decided not to go to El Paso
So . . . . Geebs and Tiffany thank you for offering to help. I really appreciate the offer, but you are off the hook and can make your Easter plans without including El Paso
I received a call from mom’s neurologist wanting to change her appointment. He wanted to move it up from the 19th and make it 30 minutes. I’m not sure why, but at least I only have to wait until the 9th to find out. Mom had her brain MRI scan yesterday.
We are getting ready to go eat lunch and then go select a new bed. Woo Woo. My playmate and I are on the move.
3/10/2010
When shopping being “picky” means going up and down every isle even though you only came into the store to buy hamburger buns. Oh, by the way, you CANNOT eat a hamburger patty without having a bun. Since patties are not a hamburger and you can not eat just meat patties.
You must walk up and down every isle and consider the merits of many items. After the merits are considered there is often a conflict because there was felt a need to buy additional items even though there were already two or more of said items at home. You must not hide items from a “picky” person in either the refrigerator or pantry nor question the value of buying more.
You must never leave a produce area without buying a head of lettuce, two cucumbers, 4 Roma tomatoes, corn on the cob, avocados and two pink grapefruits. The head of lettuce MUST come from the very back of the display and show no signs of being handled previously. The cucumbers must be not too long or too fat and have very small bumps. The tomatoes have to be Roma and picked individually and inspected carefully. The shuck on the corn must be carefully pulled back and the kernel must be full of juice when you stick your fingernail into it. This has to be done or you will find yourself with “old” corn and that is unacceptable. You also do not buy the ear of corn you just tested because it has been “used”. The avocados must be the right size, color, firmness and some other esoteric requirement that I have yet to discover before you can buy them. The grapefruit has to be PINK with very little yellow and not have the slightest wrinkle near the end. If there are any wrinkles or if it seems somehow not right you CANNOT buy it because it is too “old” and not sweet. One does not eat strawberries because they have little seeds that will get caught in your teeth or grapes unless you peel them. Oranges Washington Phoenix , Mesa or Chandler
You must always have at least 4 different types of pasta even though you do not like shells or curly pasta, but you buy them just in case. If you buy penne pasta that is okay, BUT after you boil it you must rinse it thoroughly with cold water (preferably with ice). After that you must cut each penne smaller because it will taste better. A “picky” person knows that large penne tastes differently than large penne that has been cut in half. This is very important. One must not eat a pasta salad that has large pieces of pasta, unless you cut them before eating.
When buying refrigerated goods you must always get the container that is at the very back even if you cannot reach it and must wait for a taller person to get it for you. You must always have an extra gallon of milk in case you run out of it and the store is closed. It is always safer to have two containers of cottage cheese and two containers of sour cream for the same reason. You must never ever buy a large container of sour cream; it does not taste as good as the sour cream in the smaller size. Also it is imperative that you only buy recognized brand names because the store brand or unrecognized vendors will sell you old or inferior quality. Don’t buy yogurt, it tastes sour and is bad for you.
You must be diligent and only buy bread that is flat on top. This means that you go to 3 or more different stores then get upset that no one sells the correct type of bread. Upon questioning one learns that round bread does not toast on the top and that is unacceptable. This is a fact even though you do not eat the top, sides or the bottom rinds of the bread after toasting because they are hard and taste too much like bread.
A “picky” person will decide that her clothes are not clean because they do not smell right. Unscented detergent and the lack of scented Downey
Oh, I almost forgot. Cats cannot be picky. They should eat what you put in front of them immediately or starve.
I hope you have enjoyed this lesson in “pickiness”. I have also been instructed in the ways of vacuuming, doing laundry, sweeping and cooking. If you enjoyed this instruction in “pickiness” you can anticipate further installments. These very scientific applications are vital to your health and wellbeing and must be passed on to the uneducated of our family. Being “picky” is an art in our family and must be passed down to the younger generation and any other person that will value the art of being “picky”.
Surgery Update and Neurologist Visit
2/10/2010
Thank you again for your kind thoughts and prayers. Mom will have her stitches out today. She is doing terrific. She has been on solid food since the day I brought her home from the hospital. She speaks with a slight lisp, but I think that will be gone once the stitches are removed from her upper lip. Once she realized that she was not losing half her tongue and was able to talk she has been relieved. Her fears of not being able to talk were just that, fear. Dr. Weiner did an excellent job and I’m sure his hands were guided by the big guy.
Mom got a shorter hair style yesterday and is in a much better mood. (Thank God) We are almost back to normal, whatever that is. One of her worries now is Laura, seems she has the flu and laryngitis, which is not a good thing. Also, during the cold snap in El Paso one of the pipes underground got a leak and is leaking into the small bath and in the front yard so that must be addressed. With Laura ill I haven’t decided how active I have to get to take care of that. I will make that decision tomorrow. One big decision a day keeps the hee bi gibees away. Aggh!!!
2/23/2010
Mom got through her cancer surgery with little pain and full ability to eat and speak. It has been about 16 days since her surgery and now we only have her blood pressure to control and her intermittent confused time and location issues. She gets upset with herself (after the fact) over her impulsive anger at things that she normally would not be upset about. We have an appointment with a neurologist tomorrow for an assessment of her mental state(s). This should be the last doctor we add to her crew of specialists. She is an almost perfectly healthy 89 soon to be 90 woman who does have physical degenerations due to her age. After having her with me 24/7 since before Thanksgiving I experience her mood swings and angry outbursts regularly and know how to diffuse them. Her inability to recall simple tasks and function on her own are severely impaired. Is it normal age related dementia or is she on track for Alzheimer’s? One is inevitable and the other treatable. I will continue to keep you informed of her condition. She thoroughly enjoys talking with you and is very interested in your lives; she doesn’t like me to initiate the calls, but loves to receive calls.
We received a call yesterday from Leticia (the woman who helped mom with granny Cosme) whose son and daughter in law are interested in buying mom’s house, either through a full bank loan or rent to own. This made mom very happy. She likes that the house will be going to some sort of connection. Now comes the task of emptying the house. She has always had the illusion that her belongings and furniture would go to her grandchildren. I have a list of what she wanted each of you to have. Assuming I can get myself together and the buyers are ready I will be in El Paso Phoenix
2/25/2010
We went to see a neurologist yesterday. Mom had asked her cardiologist why she was so forgetful and angry sometimes and he didn’t have an answer other than a suggestion to have her evaluated. Well, dang! I had not realized how little mom could function outside of the safe little world we created for her. She could not correctly answer even the simplest questions. She did not know the day, date, month, season or what city she was in. She could write a sentence. Even though she almost beat everyone at dominos in Marfa she could not add or subtract numbers in her head. She could not tell him what medications she was taking or why she was taking them. It hurts too much to list the other things she could not do.
He wants to rule out that her road down Alzheimer’s is not chemically caused, so here goes another specific blood test. He also wants to see if this memory loss is due to mini-strokes, so she is going to have an MRI. Watching mom struggle through this exam was very difficult. She is so “on it” sometimes that I did not realize (or maybe want to accept) that her indecision about most things was not in an effort to please, but a sign that she couldn’t remember what she likes. Her blood test is Friday and her MRI on Monday with a follow up with Dr. Reese in two weeks. He did give us a trial month of Aricept. We had tried that before, but this time it is in a step process. She will start with ½ dose for 4 weeks then move up to the regular dose on the 5th week. He feels that this gradual intake will give her body a chance to accept it more readily than just taking it full strength from the beginning. This is the most successful drug for Alzheimer’s, but if it doesn’t help or she can’t tolerate it there are 3 more to try. These drugs don’t stop Alzheimer’s, but they slow down the disease and delay its full impact.
I’m now undecided about the trip to ElPaso in late March. I will speak with Leticia and find out how quickly her son needs to move and decide from there. Finding out more about Mom’s condition is again first priority. Her blood pressure is still fluctuating and rises even under medication. More medication isn’t the answer since that would only make her sleepy and less able to get around. Her bp medication has been adjusted slightly and I hope that is enough to get it lowered. At the cardiologist her bp was 120/63 and at the neurologist it was 160/95! These readings are two days apart. Here at home she is in the 140 range.
On the upside I am very glad that all of the specialists recommended by Dr. Sullivan have been outstanding in understanding her and in making every effort to get her well. Too bad I can’t line up her El Paso
Mom visits her sister
1/25/2010
Mom wants to see her sister before her surgery. We are flying to El Paso Wednesday (1/27) and driving to Marfa on the 29th returning on the 31st to El Paso then to Phoenix El Paso
Her heart is strong and she should do fine during and after surgery. I don’t know if you have googled mouth cancer, but it’s not a pretty sight. I continue to explain to her that not having surgery and living the next 2-3 years with the pain that will come, etc. is a poor choice. Her surgery is planned for Friday, Feb. 5th. She will only stay one night unless she needs extra care. She will not be able to eat normal food for about 2 weeks and be on liquids and pain medication. Those two or three weeks will be the hardest either of us have faced. I’ve tried to get her to eat more, but she is eating less and less unless it’s cheesecake, but even that she makes last 4 days!!!!
I don’t know when you start arriving in El Paso
2/5/2010
Mom went through surgry with flying colors according to her doctor. He was able to remove the cancer with the least loss of her tongue. She will be able to talk. He also removed the cancer from her lip and the black mole from her forehead. She is in recovery right now so I haven't seen her. It was decided to keep her the night for observation and at 8am tomorrow Dr.Weiner (like wine not weener) will most likely release her.
She has a private room, but I haven't decided whether to stay the night or not. I may leave her sleeping and return early tomorrow to be here when Dr W visits. I'm not very decisive at this moment. I'm just so glad that the hospital provides internet hookup so that I can let you know without having to make all the phone calls.
I will keep you informed as the day(s) pass.
She has a private room, but I haven't decided whether to stay the night or not. I may leave her sleeping and return early tomorrow to be here when Dr W visits. I'm not very decisive at this moment. I'm just so glad that the hospital provides internet hookup so that I can let you know without having to make all the phone calls.
I will keep you informed as the day(s) pass.
2/7/2010
Before I brought mom home at around 10 am Saturday she had the nurse remove! the dried blood on her upper lip around the stitches. Oww. Anyway when we got home she was hungry and ate a salad, squash. homemade chicken soup and drank Dr. Pepper. She refused pain meds and slept a few hours. When she got up she thought it was morning and wanted breakfast. After we convinced her that it was 6pm and not 6am she wanted solid food for dinner, none of it soft or liquid.
She woke up at 5:30 am totally disoriented and thinking I had moved her to a home and wanted to call Josie to move her to Marfa. It took a good while to calm her down and convince her she was in my house and that the man in my bed was my husband. Scary. Early on Sunday she wanted to go to the store and buy more food because she wanted to cook chicken, creamed potatoes and asparagus, along with that came a salad and more Dr. Pepper. She is upset with the bruising around her mouth and really expected everything to be better today. We constantly explain that swelling and bruising is normal especially on the 2nd day after surgery.
I gave her a pain killer and put her to bed.
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