The Caregiver... How are YOU doing today?

Hi Everyone. I enjoyed Mother's Day with Mom. Last week she was in the ER. Although she is weak, out of breath a lot and waiting to pursue getting an aortic valve, on Mother's Day we didn't discuss it on purpose. I made a simple dinner that she really loved, and we went shopping at Saver's. It was a really relaxing day. Next day, Dr. Jeckyll is back as Dr. Hyde! Mother in a tizzy of fear and anxiety over the looming operation. Her birthday is next month: will be 95.

gladimhere, yes I used to kiss moms neck like 5 times and snort to make her laugh! haha!! I also have a dog who is lost without sleeping next to my Mom. Except for our walk, she sleeps all day, I feel bad for her because my sons dog died suddenly at age 4 last year and she has no dog to play with. She doesn't normally like other dogs, took a long time to get her used to his, so its just her and I now, very strange.

When 'baby' bro called on Mother's Day, I told him that I don't want to be POA. I explained how I stayed home to help dad with mom when I was in my 20s. Now I'm 50 and still caregiving. My voice was shaking when I told him that I really don't want to be POA. To me, it's the final key. As of right now, I can get fed up and know I can walk away. And my siblings will have to step in. With POA, everyone will say that I have POA, dad is my problem, my responsibility. And they have no problem not helping because I'm Legally responsible for him, not them.

I then told him of the stress I'm going through just thinking about being POA. And I told him straight out that the thought of being POA has made me think of suicide. I was trying not to cry when I told him that I really cannot be POA. It will push me over the edge. He kept quietly telling me that he understood.

The d*mn problem is I know we need POA because the cable company rate went up from $68 to $107! Talk about a big rate hike! Last year, I wrote a letter for my requesting disconnection along with his expired ID. They refused. I had explained earlier that he's bedridden and refuses to go on the wheelchair. So they mentioned the letter. They rejected the letter. Next I was told that he can call it in. I will try that today. Unfortunately, my dad is not coherent and forgets immediately. Later.

I went to an Alzheimer's Support group today. I recommended this forum. Maybe they will see this posting.

Book, stop paying the bill and they will cancel. So your dad gets a bad credit rating, who cares!

Hi. Does anyone know of an elderly person 90-95 who successfully emerged from a heart valve replacement? Or did it just mean MORE problems and a prolonged miserable life while the medical profession gets more of her money and the tax payers? Can it really improve mom's few remaining years?

I can't help feeling that when she has this operation she won't survive it.

Man, Book, I am so sorry! I hope your brother really does understand and that he steps in and helps you. Prayers!

Judda, I would ask about hospice. You are right, how much are we going to put them through, what would they really want? Sometimes I think it is a way for the docs to dig into the pockets of Medicare and/or Medicaid when they know time is short anyway. I often have problems with the drugs and surgeries that docs recommend. Why? To extend a life that has become very difficult and their brains are dying anyway? We have all read plenty on the effect of anesthesia on the brains of many elderly!

Book, how much longer until you decide to walk away? Will you walk away?

judda,I dont know your story but my Mom was living independently and had a 5 way bypass open heart surgery at age 81. She heart was forever good, I just lost her 2 months ago at age 94 to alzheimers. What get them is the anesthesia, they lose their memory!!! I would avoid it unless she had no quality of life right now. Good luck!

Glad, when my conscience can set me free. My culture, my religion have formed me in my informative stage. I cannot walk away. I observe how my sister and siblings and nieces are around dad. Do you know that they will just keep refilling the cups without washing it? I have to daily rinse it. Sometimes when I'm too tired and not observant, days later, I'm disgusted how dad's cups are moldy! I once caught my niece going to refill his very first glass of water for the day without washing it! I firmly told her that she needs to wash all the cups on his side table and replace the water with new ones. That is what I think oldest sis is doing on the weekdays. He spilled a full cup of water on himself. Instead of changing his soaking wet clothes, she puts the pamper liner between the wet sheet and him. This has happened several times. My conscience is my downfall. I sometimes regret finding religion in my late teens. It is what it is.

Judda, surgery for someone that old is a very high risk. What is the goal? After surgery, she will be very active in life? What if the anesthesia changes her by quickly advancing dementia? For me, if it was my dad, I would do my best to talk him out of it. To no avail... Because my father is so scared of dying, he would be adamant in doing it. And if I can't dissuade him from doing the surgery, then I will accept his decision to do the surgery.

So, how does your mom really feel about the surgery?

Thanks, Cwillie. That's what my dad told me when I told him that the cable company refused the letter and said he needs to call it in. He used to love talking. He's slowed down a lot in the talking department, including the phone. He said that since they refuse to accept the letter, then don't pay it. I forgot to call the cable when I came home.

Book,
Dealing with the cable company here makes me go from zero to psycho in about a half a second. My mom and I tried to go get a new remote for their tv
amd they wouldn't deal with us cause the account was in my fathers name.

Hi again. My mother is mentally sharp, and has been physically active with no other big physical problems like others have. Her heart is strong but one of the valves is weak. It would not be open heart surgery but aortic valve replacement: with either the metal one or the one made from a cow or pig. If it's the later she would have to take coumadin for the rest of her years.

She is like your Dad: scared to death of dying (what an ironic saying, isn't it?) and defiant. The ER cardiologist said she wouldn't last like this more than a year. My brother and cousins think this decision "is a no brainer". Let her have the operation. If it doesn't work, she'll die anyways. Mom is alternatively freaking out and trying to accept this big challenge. She's a fighter!

What can be done about the anesthesia? What questions should I ask the cardiologist?

Juddha--as stressful as this is, please do not believe that what you do or do not do will make you responsible for any negative outcome. You are trying your best in a seemingly unique situation. The doctor said she won't last over a year without it and she wants to live. I have heard that the anesthesia can cause problems--some temporary and some that don't seem to go away. Ask the cardiologist what he would do if this were his mother? Ask him to weigh the benefits and risks and honestly tell you what he would do. Tell your mother you will try and gather more information but the decision is hers. No matter what, you support her--I think you already told her this. She has a reasonably healthy mind, and although this is mind-boggling, I think she needs to decide. My friend's mother had kidney failure and there was nothing else to be done. She was 91 and asked her daughter, "So, what do we do now?" She definitely wanted to live. Her daughter had always miraculously helped her through multiple kidney crises. Her daughter told her, "Mom, there is nothing else we can do." Soon after, the family gathered around and she had a relatively peaceful death. I feel for you--I will probably be in the same boat soon enough. I am sending as much positive energy your way as I possibly can!

Judda, what a tough decision! I guess if your Mom had it, and got dementia, she wouldn't fear death anymore. Isnt that an awful way to look at it huh, but she will die without it so if she wants it and the anesthesia is limited, go for it. Good Luck, I feel for you, my heart aches thinking of it. You would think by that age we accepted death, but I guess not, very scary either way.

judda, I've read this and thought on it. A valve transplant is a very serious operation with a lot of post-surgical pain if they still do the surgery the old way (open the sternum). Is the surgery easier on them now? I had a friend go through open heart surgery for valve replacement and it was painful to watch him clutch his pillow. I don't know if my mother could tolerate this same surgery.

But if she wants the surgery, the decision is hers. I hope there is an easier way to do it than they had in the old days.

Hi everyone. Thank you for your love and concern. I can feel it!
The valve replacements are MUCH more technologically advance, less invasive, faster, and have a better success rate than the older traditional open heart surgery methods, even for older seniors who don't have complicated other illnesses. A 94 year old man, for example had great results. But I don't know much more than this yet.

That a 94 year old man had it done successfully is good information. Keep us informed. You are right! We do have love and concern for you! :-)

Judda, Good to see you around again!
See you over on the what's for dinner thread? If you have the time.
We have on hand: zucchini, ylo squash, green onions, fresh parsely, some grated sharp cheddar, canned cut tomatoes, macaroni.
Any recipe will do, and if not-I'll just cut it all up together, add grated parmesan, and we are healthy, right? I could leave out the macaroni.

Judda, have read backwards, and found that you are addressing a serious decision right now. Sorry-was just so glad to see you-and you are known for healthy eating. Hope any decision made blesses your Mom!

Aw, thanks Sendme! I was just learning online that people taking statins for "high cholesterol" like Mom, have dangerously depleted their natural supply of Co10. I spoke to a Functional Medicine doctor who thought my mother's doctor has been irresponsible in not suggesting Mom supplement with CO10 and in fact even to prescribe the statin. (Don't ask me which one it is.)

Even though I eat as healthy as I can, I am still about 15 pounds overweight. Boo. Maybe it's my thyroid. Wish I had enough money to see a Naturopath or so I can do a trade again like I did a few years back. It's really criminal how the FDA, Big Agri, the whole medical system is stacked up to attack and destroy NDS, Functional MDs. Supplement companies, Raw milk farms and so on. I met the filmmaker of Farmagedon last week.

Ah well. Meanwhile I am taking Q10 and my other handful of vitamins, juice veggies as often as I can, avoid wheat as often as I can, and eat plenty of healthy fats: avocados, peanuts, walnuts, and some wild (not "farm raised") fish. I love learning online: ha reason I am fat. I should be getting more exercise!!
I walked outside and saw a gorgeous owl sitting up just ahead of me in a wooded area. I think it was a barn owl. What a thrill!
And I adore Zumba for exercise too. What kinds of exercise do you guys like? How do you tackle the middle battle of the bulge?

I am feeling more peaceful about my mother. I don't know why. Something inside me shifted. Perhaps because I realize that
1. if death comes, and it must at some point, it's not a bad thing.
2. I accept my range of feelings about Mom: the love, the anger, the grief, the relief I might feel with her gone, how I'll miss her, the struggle I'll have as she declines further, the whole enchilada.
3. I have given it all to God. Whatever happens. "Thy will be my will."
I think I will be of more use to Mom this way too and less likely to drive myself to illness!

Judda, Lost the battle of the middle long ago, but mild walking is about it for me. My goal is still to balance good enough to ride my bike again. My husband is fit, rides a bike 25+ miles!!!! How, one does wonder, can he have a physical, with a b/p reading yesterday of 154/104? Not accurate I am guessing-the doctor did not re-take the B/P. We are going to watch it. I don't think the diastolic of 104 can be from nervousness.

Right this minute, I am grateful! Grateful that she finally went to bed (not sure if she is sleeping), grateful that I only lost my temper once today. Grateful that the phone calls I made to Respite agencies were returned and one scheduled for tomorrow for an interview. Grateful that my son came for a surprise visit for Mothers Day and gave me a kick in the pants to get moving on making decisions. I've been here staying with mom for 16 months and totally building resentments. My mom and I never really got along that great, nothing big or important, just totally different personalities, so my brother said I wouldn't last 2 weeks, but guess what? Here I am yet. I lived with an alcoholic for 30 years and went to a support group for that. It truly helped me to get a better perspective of living with a baffling disease. I thought, huh, if I could do that then living with dementia would not be so different! Boy, was I wrong!! At least with the alcoholic there were times of rational thinking and adult understanding of life. With dementia, it's like being with a child that cannot learn. I'm finally coming out of my own depression from being here for so long without much help from my one sibling and just a little help from the other. Now I'm on the warpath to get help here. I'm also finally admitting that I cannot do this anymore, that the person I see in front of me isn't my mother anymore and I need professional help for her. First step, find a respite agency so I can get some me time and look into step 2, which is finding a nursing home to take care of her. Trying to get my gratitude list back up and going again, but it is so hard.....

I put aside lunch money. That means I eat out a lot for lunch. I do my best to keep within my daily lunch budget. If I go to Wendys, and order a $3.50 meal for lunch - for several days, the Extras $$ that I didn't spend accumulates. Then I have enough to buy maybe a dinner at KFC, etc.. Because money is getting tight, I decided tonight to gather all my receipts and do the surveys.

Jack-in-the-Box = I got some free coupons from them from the newspaper. I haven't used it yet but it will expire this month. I ate there for a very quick lunch and just did the survey. I have 7 days from receipt date to get my 2 free tacos with the next menu order.
Wendys - I really like their large salads (which shrank a lot! but the price remained the same). After taking the survey, I have 14 days to get $2.00 off the salad. Yippee! I didn't think it was worth spending $7.00 on that shrunken salad. I feel comfortable spending $5 + $2 coupon for it, though. =)
KFC - after taking the survey, I get a free popcorn chicken go cup with any purchase. Yay! I've never tried their popcorn chicken and didn't feel like buying it - just to find out that I don't like it. As a freebie, I can now try it.

I'm not making a dent on the stomach department. It still keeps expanding. I did buy one of those ski-type exercise machine. It was great for a while outside on the porch. Except the last 2 times I used it, the mosquito were biting me. Mosquito love me. I can be seated around the porch table with 8 people. And I'm the one who is *slap*, ...*slap*... scratch, scratch.. *slap* ... While giving dirty looks at my family who just sits there talking and laughing without being bothered by those pesky bugs.

Casey, try calling your senior citizen government department/program. They can let you know if there's a program that your mom qualifies. Or refer you to other places that deals with senior citizens. With my parents, we had the govt caregivers who come 4 hours a week so that the caregiver can get respite. They also mentioned the meals-on-wheels program which for years (over 20 years) was only Mondays thru Friday lunches. This past year, they have now implemented Daily Lunch meals delivered to my dad. He has problem with solid food, so his food is delivered as grinded meals. They also referred me to another program - the national family caregivers support group - for me, the caregiver. They meet once a month, and provide free breakfast and lunch. We have talks, games, arts & crafts, movies, etc.... This month's meeting is at the cinema. I can bring a guest with me. But, I'm not going. I think movie theaters are too loud. I always come out with a terrible headache. I don't know why they're trying to make us deaf with those booming loudspeakers.

Rereading...the meals-on-wheels, this past year, now includes Saturdays and Sundays. The contractor for these meals was Korean. Well, the first couple months of winning the bid, all their meals looked... funny. Tofu, seaweed, etc.... some kind of cake patty that .. tasted funny. Their beef with veggies looked normal - until you tasted it. Oriental flavor beef stew. Ugh! Those meals ended up wasted. Dad refused to eat it. I refused to eat it - because whatever seasoning they were putting in it - I was having allergic reactions. They also won the bids for the senior citizen centers, the public schools and the prison. They also were not eating the food. Kids were complaining about it. The prisoners were complaining about it. Soon, the govt realized that most of these food were being wasted because ... nobody liked it. I remember hearing it on the news and reading about it - all these complaints. They were putting pressure on the govt to discontinue with the contractor and find a replacement. I think they learned pretty fast! Because they cut back those seaweed salads, cake patties, tofu, etc... and went back to the local tastes. Sorry.. I got distracted. Trying to delay in changing my dad's pamper....

Today was my only free day of no secular work. My one free weekend was spent spring cleaning the kitchen. Fave sis is great at cleaning. She's one of those who believes in literally going through EVERYTHING and throwing it out. Oldest bro and his wife came over to help. My dad, oldest sis and I are hoarders. Obviously after today, my mom was also. Although she has passed away 3 years ago, we never really cleaned the house, thoroughly in decades. Ahem... that was mom's forte. My idea of cleaning - is transferring one junk from one area to another - preferably somewhere hidden. My idea of cleaning/sweeping only the areas that i can see. Sis, bro, SIL, and BIL obviously follow mom's way of cleaning. We spent hours cleaning out the kitchen. Literally cleaning it out. We found 2 areas that obviously 2 stray rats had 'nested' before we finally caught it - years ago. They hid below my dad's huge metal cabinet and mom's huge box of pots/pans under the counter. I don't cook/bake so I've never bothered to look under the counter for anything. It was very very gross. Smelled like rat! Ugh..... We have taken out a lot of dad's huge pile of catalogs, books, etc... We also found his navy flag!!! Oh my gosh! BIL folded it correctly and SIL told me to put it in a tupperware for safekeeping. When dad dies, we will be draping his flag over his coffin. I've never touched a real American flag! We also found Dad's very old photo album of his ... military day. I couldn't find him in any of it - but it had a lot of the bigwigs in it. I was going to keep the flag out in the kitchen. Bro said to take it inside and keep it safe.

Mom had lots and lots of big baking pans, all kinds of pots/pans, and lots of knife sets and silver utensils. I told bro to take all of it. The silverware utensils had some very nice handle designs. Because I tend to hoard stuff, I don't want it. I'm still struggling to continue to downsize my ... LeSportsac and Kipling purses.

They wanted to take our dining table. Uhm... if you take it, where are we going to eat? Where will we put the rice cooker and our single burner? The dining table was bought by mom. It's one of those really thick heavy dark brown table that can expand. We've had that table for .. . over 27 years. Although I want to get rid of it since it's a large table for just sis and I, for sentimental values, I want to keep it. SIL found this very pretty breakable bowl among mom's hidden treasures. It was sooo decorative. She gave it to me. I held it and asked if she's sure it's a bowl to be used or for decoration because it's soooo pretty. I was so fascinated by the subtlety, I kept tilting the bowl staring at it. I kept it.

There was a huge closed box under the counter. Bro peeked into it and said it was full of pots/pan. I immediately said that I don't want it. Don't open it in front of me because i might change my mind. Just take the whole box away. That's what they did. I kept most of mom's Emeril pots/pans/covers and the ones I bought, and told them to get all the other pots/pans. Mom had soooo many! Our kitchen - now echoes when we talk. And it now smells of rat!!!! Oldest sis has mopped and mopped but it still smells of rat. I sprayed it with Lysol. And it still smells of rat. (Oldest sis and dad, before his stroke, believes in leaving the sliding door wide open. They both mistakenly think that rats don't climb up stairs to the porch to enter the kitchen sliding door. It drives me crazy that sis still keeps the door open when she takes her smoking break!)

Next weekend, they will be spring cleaning the inside kitchen and livingroom. Sis said that we didn't need to clean it because she did it a few months ago. Her hubby snorted. Sis turned to me with 'this look' and said it shouldn't be messy with junk. I sheepishly looked at her and said, "I will do my best to move my junk to another place in the house by next week." I have a very very difficult time throwing away boxes of the rice cooker, my wok, the grill, the microwave plate... get it? I hoard boxes of everything we buy and opened. I cannot throw it away - just in case we need to repack the rice cooker (although we're using it daily) or the wok, etc...

My mother actually said "This is a nice place" !!!
Nothing else she said made sense, but that came out clearly- she said it a couple times :D
Whew.... finally.

Mica, I'm so glad that you will have some very good memories of those rare times that your mom has ..finally .. made a compliment. Something positive to think of her.

What a coincidence. Most of mom's photos had her with a blank face. The years leading up to her first diagnosis, during her dementia, and to the end. It was very rare to see mom smile or laughing in photos. Yesterday, we found some photos that dad hid in his metal cabinet. Among those photos was a picture I took of mom. She was already diagnosed with dementia but not yet the really bad sundowning stage. I stared at the photo and smiled widely. I have that exact photo - enlarged and framed on my bedroom wall. It's my favorite photo of mom. This is the new mom with a new personality. She was smiling, laughing and held so dearly to that baby doll. (Once she started sundowning, she didn't care at all for the doll anymore.)

Teacher niece said something that made me angry. She said that if my other brother had grandma (my mom) babysit his kids (4 !!!) along with her mom's kids (oldest bro had 3!), that grandma wouldn't have had Alzheimer so early. I got so angry. I told her straight out that i remember what it was really like. I remember coming home from college and hearing grandma screaming at her and her young cousin. Grandma never ever yelled like that to the grands. I told niece that I kept telling her parents that something was wrong with grandma. That they shouldn't let her babysit (for free, of course!) anymore. I then asked her, "Remember when they found you and cousin J walking around the hotel parking lot with no clothes on and soggy pampers?" That was grandma beginning with the dementia. Niece kept quiet. I'm sure she doesn't believe me. But I have lived with my parents all my life. I saw, at age 21, that mom was changing. I kept telling everyone that something was wrong. No One was listening to me. I remembered being so frustrated. "Oh, no, mom NEEDS to take care of the grandkids. Mom NEEDS them, etc..." Yeah, right! sigh.. I should be posting this in the Dysfunction thread. Not here. Whatever. Her father was the one that people were praising at mom's funeral for taking such good care of mom. My foot!!! Him and his wife and my teacher niece rarely visited mom.

I didn't feel like spending lots of money for a kitchen cabinet curtain. So, I went through the cheap route. I dug up all the shower curtains given to me from sisters. I chose the one closest to the color of the kitchen. I then cut it about 26" high. And then the bottom half another 26" for the 2nd counter cover. Tomorrow, after work, I will punch holes on the bottom half of the shower curtain to hang on the skinny spring rod. I went to an oriental store and bought the cheap quality rods for $5.99 each that can extend up to 48". The first counter curtain cover is already set up. It looks so tacky! =) .. that's me. As long as it covers the empty bottom cabinet, I'm fine. If fave sis comes next week and thinks it's soooo tacky, it might be incentive enough for her to go and buy us a real sink curtain cover. =)

It's been so long since I've downloaded ebooks from Smashword. Took me several tries 'download' the book trying to find Where it went on my laptop. I finally had to look for help on the website on how to download. Ha! I didn't know that I had to hook up the kindle (or ipad) on the laptop to download it into. I did it the very old fashion way. I downloaded into my file, then transferred the epub to the laptop's desktop, then transferred it into my Calibre Library, convert the Epub to Mobi Output. After I change dad's pamper, I will connect the Kindle and transfer the books from Calibre. Then, when I have time, I will see if I can do the same with the iPad. I wonder.... if I sign in on the Smashword in the iPad, can I just download it directly to it? I'll figure it out. I've already downloaded the BN app on the iPad. There are some ebooks that's not in BN or Amazon but I can still find it in Smashwords.

You know, I still cannot purchase ebooks (even free ones) on the BN website because they don't send electronics overseas. I've tried all the customer help's email advice on how to do undo this restriction. And it's still not working.