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.
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