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I'm finding myself debating how much longer I can keep caring for mom. My mom and I agreed that as long as she wasn't a danger to herself and she wasn't bed ridden, she would remain at home. But quite honestly, I'm tired of cleaning poop and giving up my life to care for her. I feel I'm the caregiver of my mother's body, not my mother. I've been at this 4 years now and have dealt with all the meaness from my family. This is probably tiredness making me feel so down and trapped. I guess the trapped feeling is because I know financially a NH isn't an option, or at least without another sacrifice, our home.
Well enough of this pity party. I like hearing everyone's stories too. I miss our oldies but enjoy of newbies too. I hope everyone has a good night.
Hi Crew: My dad, who can barely speak due to his stroke, can say the F work very clearly. He says it when he's frustrated when he wants to tell me something, but can't get the words to come together.
I have more to tell, but no time right now. Bobbie, thanks so much for telling us about the Boat Angel. Something else in your story was very helpful to me. Talk to you all later.
Igore, My Father-in-law mutters and curses all the time. He has no reason for it either. One time I took him to church and this elderly gentleman says "Hello" and my father in law says "Son of a bitch". just like that. He wasn't calling the gentleman a name it just popped out. The gentleman was very understanding. He said that his wife who had passed last year had alzhiemers and she did the same thing all of the time. I don't think it is as uncommon as you would think. I happened to sit next to this same gentleman at church and it was all I could think about through the whole meeting.lol
Hello to all the folks round the castle. I like hearing the stories of others. Everyone's story is so unique that we at times think we are the only ones experiencing what we do. Every story is different but yet we all share commonality that we serve others. Most of you are deeper into that than I have been. A lot of you have cared for a parent who may not have been the most loving or kind. Others are dealing with junk that I have never considered before.
For me, I think I imagined caring for my Mom would look the same as my Grandma living with us when I was growing up. My mother's mom lived with us as far back as I can recall. Grandma was to me the sweetest woman to draw breath on God's green earth. She was born in 1900, grew up poor, married an abusive alcoholic, and had 5 kids with him before divorcing him in 1942 after about 30 years of a hell on earth marriage.
Grandma lived with us because she was poor, not because she was frail or sick (that came much later). She read her bible every day. She was probably one of the reasons I was a fat kid (120lbs in fourth grade). She liked to keep us fed. I remember this woman as never being bitter. Her smile was as sweet as her apple pies.
Grandma owned a shanty on about 2 acres in the country. She rented it to her nephew for the grand sum of $5 per month. She would get a money order in the mail. When it came, she would hand it to me and tell me to go to the store/post office and buy her a book of stamps and I could have the change for pop and/or candy. As a ten year old in '74, I knew rent for $5 was really cheap. The first time I saw the place, I thought "Yep, $5 is about right."
The place had and still has to this day - no running water - and outdoor toilet - a pot belly stove for heat. I actually have a distant cousin still living there. The place is so tangled in heir ship that it will never be sold unless the taxes go unpaid.
Anyways, I thought the experience would be similar with having my Mom live with us. The problem is Mom ain’t grandma, I ain’t my Dad, and so on. Grandma was in decent health while I grew up. Mom has COPD and diabeties. One the things I failed to take into account when having Mom move in was how my wife would feel about all this. She seemed ok upon early discussions prior. I now realized that while I was being the great servant son to Mom, I had neglected to let my wife know she is first. I have been working on correcting that. At one point I was on my wife over to my brothers house to not ask but demand that he take Mom for awhile. My wife upon learning what I was doing asked why? I said to save our marriage, to give you a break, and to let you know you should come first. Her response” Don’t go to your brothers. I know you want to take care of your Mom. I just wanted to hear that I was important".
Hence, my thick skull finally got it. You assume that everyone knows and understands where you are coming from. Not always the case.
Christina, regarding what I said about my Mom’s estate last night, when I read that tonight I think it sounds pious and full of shit. Yes I am trusting God regarding these things but the real truth is. Not including her home. Mom may have about $30,000. We spoke with an attorney a few weeks back. He confirmed that giving her estate away would keep it from being used, AFTER FIVE YEARS. The problem with that is one she has to not need NH for five years, which is an unknown. The other thing is that all recipients would have to not spend it during that time. I think I could handle not spending it. Not sure I could say the same for my brothers (God love ‘em). So I figure while Mom is here I will use her $$ for HER needs. Whatever is left will be disposed of according to mom’s will and wishes. So when I say I am trusting God, I don’t wanna hide behind that so much as to just say that I am really feeling like “screw it! What ever happens, happens! “ That is really what I should have said because that is closer to the truth. I don’t want to stress over 30K. It ain’t like we are Rockefellers.
We journey forward and hope for the best. Peace to Cattails, Bobby, (woohoo) Christina, and Cricket.
I just caught up reading from the last couple of days of posts. I've been away and totally absorbed in a seminar. Anyway when reading posts about parents it reminded me of a comment in one of my favorite books where the Author says in reference to children and parents, she said "to a small child in their world, the parent/s are the giant/s in the room", so very true. I to always wanted recognition from my parents. My Mother gave me to my father when I was born and said "here you take her, this one is yours, I don't want her" thus my quest for my Mother's acceptance and approval proved futile. (I really get it) And for my father well that's another long story but there is love there so I am grateful for that. I am on my 3 and final parent of being a caregiver for and the most important things that I have learned from it is that I believe it serves as a teacher for us. If we are brave enough and humble enough to look for the changes within ourselves no matter how awful and screwed up the parent we are caring for is we will come out of it better people instead of bitter people. Wow that was a mouthful! That doesn't mean we won't also come out of it with battle scars and exhaustion, but we can learn how to protect ourselves physically, mentally and soulfully. We can learn when it's time to stand up for ourselves, be our own rescuer and liberator from the harsh task master and driver and defend ourselves from being made into a Martyr. When I read the posts here I can see that we all are struggling with the same issues even though the parent and situations are similar or different and that gives me hope. Another thing that helps me through this journey of parental caregiving is to focus on the present time and keep the past in the past. That is easier said that done but we were hurt enough in the past and it only makes everything harder on ourselves when we carry the past with us. I am learning how to let it go little by little and even though bits and pieces come to the forefront from time to time and I have to let go again and again it helps.
Christina, try sneaking a granny cam or spy camera in the room and attaching it to the bottom of the TV or some place where it won't be noticed.. (I would do it just for the pure fun of doing something sneaky) anyway it would allow you to see what goes on (I think).
Cattails, thanks for sharing your story! Jen YaY ٩(͡๏̯͡๏)۶ YaY Happy Dance! Igore, I found my BFF here and isn't it wonderful?! Bobbie, I really enjoyed reading more of the story about the boat angel and you are an amazingly awesome lady and I can't wait to meet you! Kimbo, dang I hate when I post and it gets deleted! I will look forward to your next post... do what I do and copy your post before you actually hit the submit button so it it doesn't go through you can close and reopen the website and paste and post over. Welcome to the newcomers! Blessing to Diane, Rossella, Shirley, Linda, and anyone I might have missed.
Morning Everyone, Great to see the Captain here for a full update. Glad you got in a day of fishing and I enjoyed hearing the story of Boat Angel:) bless both your hearts. I continue my prayers for healing and mercy. The human will with motivation struggles for Survival, and Love is that motivation. Love you Bobbie. Xoxo Igore, yikes, I often blurt out choice words at times of exasperation. A thought will pop into my head while I am vacuuming, and as it processes, I can hear myself utter "Oh crap", and to an innocent bystander, it might appear I was having a fit. Haha! We have random thoughts and conversations with ourselves which can lead to an expletive. Sounds normal to me. Haha! Your Mom is blessed to have you, good boy, and I think it's great to trust God--I do-- but He also created Laws, do protect her/your assets. I also think cattails is a good friend. There is nothing better than to connect with someone who understands, supports and accepts you. When you are interacting with like-minded, compassionate people who care enough about doing the best they can for a relative, and then want to learn more and support others--what do you expect. That's why I say "WhooHoo" all the time. We'll have our mansions in Heaven on the same block and won't that be fun?! Thank you, Shirley, meanwhile back at the ranch, for your input on Mother. She tried to tell me something yesterday that was bothering her, but no way could she get the words out. I tried to calm her down and say the words I could figure out so maybe she would form the next word, but it didn't work. I sense there is frustration in her yet. All mobility is gone, but she has good appetite and no problems swallowing. I fed her a whole peeled, sliced pear yesterday and a piece of chocolate; she enjoyed it all. I tried a different technique in speaking with her yesterday and she was more alert. She replied in a way I could tell she was keeping up and understood. I guess it is hit or miss. I equate it to a solenoid burning out. My hyper awareness makes it a tough thing to endure; every subtlety is amplified with me. Exhausting. Anyway, that is why I must always have detailed intense projects going on to distract me. Don't tell me what's wrong with me-- like I'm autistic or a savant. Don't think I could handle it. I don't do math, so forget it. Sorry, didn't mean to go off. Oh look, I'm venting. Heehee Got last minute studying to do, so I'll sign off till mañana. Keep bonding and venting: It is the glue and breath of life around here. Love you guys. Have a great day. Christina xo
Thanks to all for the welcomes hope this site will help give me insight and hints as to dealing with MIL!! Cattails: I am here for the "duration" for Dad. As he is doing so well it could be 5-10 yrs!! WooHoo! I love FLA. I will go back to GA for vacations and when I can no longer live alone. That is if I can't talk my caregiver into moving to FLA. New development....MIL is a binge drinker, she continues until she gets hurt. As per most folks with this issue she is in denial. She fell a week ago and hit against the kitchen cabinet. 41 staples in her scalp, 3 stitches in eyebrow and a broken wrist. Says I dropped a piece of ice and she slipped on it...wonder when the last time I got something out of that freezer....a week ago at least....she got tangled in the walker and lost her balance and down she went...thankfully I was close by. As with head wounds blood all over the place funny part was she was at the drawer with the kitchen ..handy anyhow.. EMT 's had fun trying to figure out how to get her out of the house as the walk areas to the door are too narrow for the stretcher!! Not to mention she is grossly overweight!! So much fun...they said she was very happy and cheerful during all the testing and putting back together! No Wonder with all the booze in her! As soon as we got home she popped 2 pain pills and had a glass of wine! Any Ideas as to how to deal with a binge drinker....???? At a loss
Cattails, the Boat Angel is a man I only just met about a year ago. I bought this boat after my mom died and after being her caregiver for dementia for 5 and a half years. Incidentally, mom had all of the issues that Christina's mom and it looks like your mom had. I know that my mom and I connected though but that didn't change the behavior of her sitting there and staring and glaring at me and the fact that no matter what I did it wasn't enough and blah blah blah. So I guess that's why I and so many others can relate to what you are writing. Caregiving anyone who is out of their mind is an insane job, period.
Anyway, back to last year. I met this person at a boat yard, a wonderful place for boats, very high end with many gorgeous yachts and then of course there's me and my boat... not a gorgeous yacht but a good boat.
Before he was the Boat Angel, he was just another boat guy, staying on his big yacht and hanging around the yard. The people here had known him for over 20 years and told me that he was pretty good at problem solving on boats in the engineering sense and that he used to have a very successful commercial heating and air-conditioning company. That was good for me since the ac units on my boat needed work. Big boats are very expensive so the yard boss said I should go and talk to this guy to get some ac answers and figure a way to bring the costs way down.
Now before this, he had gotten my attention when there was an altercation in the yard where one of the captains was yelling at me and swearing up a storm. I am used to settling my own hash but was amazed when all of a sudden this 6'5" redhead stepped between me and the yelling captain and put a stop to it immediately. That was the first time I have memory of seeing him and that is also the first time I saw a born and bred Southern boy in action.... aside from my daddy who was from NC and was a gentleman through and through until the booze got a hold of him in the early 60's. So this big guy takes his time and starts to come to my boat to have coffee... as in, 'would you like some coffee?' 'I will if you're having some...' so this starts to be a habit where he is coming every morning and sitting for an hour. pleasant conversation and it's all about boats. By this time I was in the ending stages of a long term relationship but the last thing I was thinking about was involvement with anyone, much less this guy who was younger and pretty good looking and what in the hay could he want from me but some coffee and boat talk and I was way cool with that.
OK, so I go back and forth to NJ to settle my mom's business and close the house after endless estate sales and he takes care of my boat while I am gone. Fixes the ac units to where I have a boat that can be cold enough to hang meat in.... paints the engine room, does this and that. Fixes stuff and doesn't tell me so I end up discovering it working properly, etc etc.
By the mid summer last year, he had discovered the melanoma on his arm and they gave him radiation and chemo and after a few months of that his cancer went into remission.
By this time he was on my boat every morning for coffee and every afternoon for iced tea. And by then he had told me of his cancer and I was concerned because his diet was crap, he was ingesting so much sugar over the course of a day... Sweet tea, cokes, fried stuff... that I spoke up and said that if you want to stay in remission you have to change your diet. Ya well we all know how that goes...
Now we were still boat buds in the sense that there was no romance there but that changed when I came back to the boat in July I think to take a break from the estate sales and the sadness in NJ. I drove 13 hours to get here and got pounced on. I alternated between being freaked out and liking it and decided to go with liking it after a long time of figuring it out. I didn't really want a relationship with anyone but here's this boat guy who knows how to handle all the systems on this big thing (the boat haha) and he's nice and likes me and we have a pleasant time together so why not?
I left for NJ for the last time which took almost 3 months and then came back to the boat to find little things squirreled away.. like a Magellan pocket navigator.. new dock lines, and my bed fluffed up and turned down like at the Waldorf. Well damn.
We were just moving into the omg this is going to be amazing part of the routine when he went for routine blood work and it came back abnormal. A few days later he went again and his white counts were off the charts. He went in for the cat scan and mri and they discovered that the cancer had spread from the original site into his lymph system and was Everywhere.
He started chemo again and radiation but the cancer had a tremendous hold. I went online to learn that melanoma that has spread to lymphoma has a 7% to 14% 5 year survival rate.
He came out of the hospital and moved into the boat with me. I put him in the double cabin so he could sleep and be peaceful with the boat rocking and I began to cook macrobiotic food and make organic juices for him to help the healing from the chemo and the radiation and to see if he could get his white counts down.
He has very little interest in not eating the way he should and I am way too tired from already doing my time as a caregiver for my mom and never having the time necessary to heal from the PTSD that comes from long term dementia caregiving before being thrust into another situation that was full of stress and grief.
I do my best. When he is here on the boat he wants for nothing. He is cared for and well fed with healthy food and juice even though he begs for a pizza now and again. I however, am not doing so well in the fact that I live in a world of perpetual grief and sadness and only with him away for almost a month now have I begun to laugh and take part in my own life.
He is due back to the boat in less than a week and believe me when I tell you that I have mixed feelings about the whole deal. No one can be as selfish as the dying who figure that they are not going to be around so do whatever you need to... My mom was like that and that was why she left me a nightmare of shit to deal with.
The Boat Angel is the Boat Angel because he helped fix and save the boat from undue costs and time but I do think that my debt has been paid tenfold and we shall see how this all will transpire. I don't think that me being a caregiver again is what is good for me and I have to do what is good for me or this shit will kill me.
I almost died from taking care of my mom and her precious 'things' and I need a break.
So Cattails, there is the long winded answer as to who the Boat Angel is.
Welcome to all of the new folks who have posted and I am off to deal with more boat stuff today.
Love all of you guys more than you know and thank you everyone for being here.
I am curious if anyone else cares for a person that seems to be of sound mind in most respects but sits and cusses to themselves for no reason. I have heard Mom randomly cussing. Sometimes when I catch her I will say "Potty mouth!" "Whaaaat?" "You and your cussing, Who are you cussing at?" "I don't know"
I am not sure if this may have something to do with a brain anuerysm she suffered back in '93. She cussed some before all that but that random cussing at no one seems strange. Elderly turrets?
Anyways in other aspects things are good at home. When I read what some of you go through I realized I am a rookie at this. Mom is ambulatory and of reasonbly sound mind. For a long time I went through a lot of crap trying to decide whether or not to try to "protect" her estate in the event she needs to go to a care home. I have concluded that I am going to trust God and let what happens happen. If her assets have to be liquidated in her final days then so be it. In the meantime she has decent insurance (retired from state government)
Christina, I get what you mean about the someone being to perky. I don't mind someone being upbeat but phony kinda pisses one off.
Cattails you are my bestest new friend and I ain't afraid to say it. I emphasize with what you are going through with your Dad. I pray for comfort and peace to you and your husband in the days ahead.
Laugh, Laugh ,Laugh, like you would have when your toddler did it. Its about how old they are in their head. It isnt their fault. I try to remember some day I will be like that since I am my Dads protoge. So I constantly tell myself to be patient and laugh. Otherwise I'll cry and end up crying and depressed all the time.
Christina, sorry to hear about your Mom. The bruises may just be her skin and capillaries getting very fragile, and her circulation getting bad..When I worked in hospitals I saw that on quite a few of the elderly patients. The backs of the hands turn black, the arms, and then the legs start getting those black bruises. I would ask the people if they had fallen or something. Almost always they would deny any sort of injury. Don't know why the nurses or Dr can't tell you that? Bobbi, I bet the boat Angel would be happy you went out and had a good time.
Good Afternoon Crew, Jen!! way to go! hey there, wanna be a boat engineer? If you can change a faucet.....!
cattails! ya, just write it all out and get it off and out of you. It really helps and it has really helped me personally no kidding. These people are the reason I am not institutionalized....
Boat Angel still in hospital with dialysis and that one last chemo. He had that and now it's just about getting his kidneys well enough for him to leave.
I am sorry to say that I have enjoyed the respite and went offshore fishing yesterday. We were about 15-16 miles off the inlet and in the N Atlantic and it was a beautiful day. There were 5 of us and they baited me up a pole but with the ADD that lasted about 90 seconds until I figured out a way to put the pole in a rod holder and still see it from the salon so I could keep an eye on the pole and watch the History Channel. I haven't seen regular tv for about 18 months so that was great. I lay up in the salon in the shade watching my pole and when the pole got a strike I would yell until someone came along to handle it. Everybody put up with me and with the boat rocking on the hook I slept like a fat baby.
Today I topped off the fuel tanks which meant that I had to move the boat to the fuel dock. Big production that comes with a lot of chop busting from the guys in the yard. No one likes the fact that I have a single screw and that it's way harder in close quarter handling than a twin but hey... eats way less fuel so there you go. The boat I was on yesterday took 700.00 of diesel just to run less than 10 hours. The boat owner was very gracious in the fact that he didn't whine about it and want us all to chip in. Whew.
Had fun driving this boat even though it is scary at the same time. At least I don't have the nickname 'Crash'. the yard guys gave that honor to another new boat owner who pulled to the dock yesterday, hit it, then threw the bowline off the boat to the dock, jumped onto the dock and then fell off the other side all the while the boat was still in gear, his dog was barking and all general hell was breaking loose. Nobody died and the insurance company didn't have to show up so all in all it was a good day for ol 'Crash'.
going to watch another Mad Men on Netflix. Love the Netflix.
It's good to see everyone here, love you guys way more than you'll ever know.
p.s.... Jen, there's a HUGE joke about white men... it's called Congress.....
Hi , a beautiful day here (for a change!) Hi Christina, sorry to hear your mom isn't feeling well, and you can't get a good answer from them. It's maddening. Keep calling the dr until they explain things to you. My mind has gone blank, so I'll sign off for now, good luck to all..ssk
Happy Monday Gang, First, Jen!! You are so amazing!! WhooHoo! Did you use plumber's tape and channel locks? How is it today? Very proud of you and your creative and practical talents:) Kimbo! How did Hannah do? I bet she was smiling the whole time! Go Bragh! Big storm gave us only 2 out of 4 days and only one segment was fierce, then we got 2 seconds of tiny hail. That's California weather. Today I had to cut a shrub down I was training on a trellis. Oh well. My Mother has been very unresponsive the last week, not even smiling when I walk in and tell her I am there. She blabbers and was having bad dreams yesterday. I think they were dreams. Can't understand her when I ask what it was about. She has bruises all over her arms and back of her hands and her shins. What the heck is that from? I have asked the caregivers. They do not understand the question, I have asked the owner's assistant, she is a bit too perky for me in that position. Phony. The doctor does not call me back. How do we know if she is in pain? Why the hell do they ignore me? What do I have to do at this point? If anyone has any ideas, I would appreciate it. I hope all is going well with those of you who are caregiving, like sleep and youtime, from your charge: kind words and behavior; I hope those of you beyond caregiving are feeling proud of the love and devotion you gave your parent. I pray each finds peace and new directions to fulfill those empty spaces. Wherever you are, take care of yourself. Have a great week. Love, Christina xo
Hi guys, wrote a long post and it was gobbled up! Still ticking! Tired from St. Patrick's Days! Between husband and I we managed to get Hannah where she needed to be on time! Yay! Will write more later! Love you all! XXOO Kimmie-Kimbo!
e-mail virus. Even the most advanced programs from Norton or McAfee cannot take care of this one. It appears to affect those who were born prior to 1960!!!
Symptoms:
1. Causes you to send the same e-mail twice. Done that! 2. Causes you to send a blank e-mail ! That too! 3. Causes you to send e-mail to the wrong person.. yep! 4. Causes you to send it back to the person who sent it to you. Aha! 5. Causes you to forget to attach the attachment. Well dah! 6. Causes you to hit “SEND” before you’ve finished. Oh, no not again! 7. Causes you to hit “DELETE” instead of “SEND..” And I just hate that! 8. Causes you to hit “SEND” when you should “DELETE.” Oh No!
IT IS CALLED THE “C-NILE VIRUS.”
Hmmm…..Have I already sent this to you, or did you send it to me?
I DID IT! i REPLACED THE FACET IN THE BATHROOM. I had to take the sink apart and I cleaned out the drain too, was disgusting but fun. I did it in the early AM's so NO One could offer me any "help"... No leaks yet...
She sees and knows all now, cattails. Believe knowing you gave your best effort with compassion. In the wind, we can the hear distant "Ah, Ha" of many souls looking down. They realize what they were afraid to show on earth. Next time you are on a walk, feel the wind on your face and receive it from your Mom as " I always loved you, Maureen. You are a good daughter." hugs, dear one.
Hi lildeb and Christina: Thanks for your thoughts and wisdom. I make it sound like I hated my mom. I didn't. I really felt for her. I was just very disappointed that the last year was so difficult. I would have liked to have felt I reached her and that she could have been comforted by my efforts. I think that is my biggest disappointment, that I couldn't give her comfort. I know she loved me, but it wasn't the kind of love that gives you warmth. More of an understanding.
Thanks Christina, and everyone else as well. Meanwhile, back at the ranch. The horses are doing well. The colt, Omaha is still going to need surgery. (to fix his sinus, where the cougar bit him). Going to try and get that scheduled, have to figure out how to get him to the Vet, and back, and not take too much time off work. There are Vets here, but they don't want to do it. Have to go to a surgeon 5 hours away. I did get to saddle up the horses yesterday, and go for a ride. I rode my 30 year old horse, that I still call Kid. He lived up to his nick name, and did a little bit of bucking, when we started out. I was going to just walk the old guy, but after his little fit, went ahead and galloped him up the road, (just a short distance). Last night the dogs found a skunk in the yard, you can guess what they smell like this morning. But, they killed the skunk anyway. This morning they are slinking around looking guilty. I guess they know a bath is coming. Take care, Love Shirley
Ditto, cattails, but however we were raised, lacking nurturing and encouragement, we still turned out really well. Sometimes I think that I was too giving and touchy with my kids, as in "180 degrees from dysfunctional is still dysfunctional" , said John Bradshaw once upon a time. We endure, we survive, we change what we can and try our best. All of us are so different, our personalities and coping skills start forming when we are small. If we can make it work and break the negative cycles-- which include breaking the 10 commandments and other habits-- we are blessed. I have seen in my family that the males with addictive or absent fathers repeated the roles. The women did better, improved the quality of everything, from husbands to mothering skills. We had a strong matriarch in my grandmother, but she was a ball buster ( pardon my French, Cuz and Igore). I saw the family dynamics intensely as a small child, and despised her lead. I spoke up all the time and stood alone. Funny how a little girl with no support continued in that modus operandi, but we are who we are, I believe, and we navigate in these families, like sperm going to the egg. The strong ones make it and the weak ones die off. Theory of natural selection, in a way. I am still not quite sure what life is all about, but we plod on, one foot in front of the other. Hope you all have a pleasant Sunday. Blessings and Love to All, Christina xo
Cattail: I know my mom side of the family that their were hardly any hugs, bedtime stories, or just to hear the word,"I love You." I know that she did love me but it would had been nice to hear it sometimes my mom was very set in her ways as well but she was an alcoholic, diabetes, smoked and had to take anti-depressant medicine due to she would get suicidal and that wasn't a pretty sight to see. She passed in 1999 due to a heart attack and I was glad that it was quick for she wasn't happy here on this Earth. I do believe she has found peace up above us. What I guess I am trying to say is that, even though it seemed that you could never do anything right for your mom, I think you did in a lot of ways for she wanted you around 24/7 even though that sounds a bit selfish, but if she didn't need you she would not have wanted you around. If you can look at it in that point of view. Maybe also she new she had a illness but she refuse to let it beat her as long as she could for we really don't know what goes through someone's mind if they don't open up and tell us. Maybe she didn't won't you to know for maybe she didn't won't you to think she was a weak person and that was why she was so feisty. Sorry you had to go through such a rough time with her and I hope you do find peace within yourself for you done all you could do for her. At least we know she is in peace right now above us.
Everyone: It such a heart breaker to how AZ can take a toll on our love ones and on us as well as a caregiver. I hope someday they will be able to find a cure for such a devasting disease. I hope those who are going through such heartbreaking times to find some sort of peace within yourself and try to find one small thing to help enjoy life. I am going to try and enjoy the weather and take a big breath of fresh air today. I hope everyone has a nice day today or at least a few minutes.
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I'm finding myself debating how much longer I can keep caring for mom. My mom and I agreed that as long as she wasn't a danger to herself and she wasn't bed ridden, she would remain at home. But quite honestly, I'm tired of cleaning poop and giving up my life to care for her. I feel I'm the caregiver of my mother's body, not my mother. I've been at this 4 years now and have dealt with all the meaness from my family. This is probably tiredness making me feel so down and trapped. I guess the trapped feeling is because I know financially a NH isn't an option, or at least without another sacrifice, our home.
Well enough of this pity party. I like hearing everyone's stories too. I miss our oldies but enjoy of newbies too. I hope everyone has a good night.
Love ya,
Diane
I have more to tell, but no time right now. Bobbie, thanks so much for telling us about the Boat Angel. Something else in your story was very helpful to me. Talk to you all later.
Love you all. Cattails
For me, I think I imagined caring for my Mom would look the same as my Grandma living with us when I was growing up. My mother's mom lived with us as far back as I can recall. Grandma was to me the sweetest woman to draw breath on God's green earth. She was born in 1900, grew up poor, married an abusive alcoholic, and had 5 kids with him before divorcing him in 1942 after about 30 years of a hell on earth marriage.
Grandma lived with us because she was poor, not because she was frail or sick (that came much later). She read her bible every day. She was probably one of the reasons I was a fat kid (120lbs in fourth grade). She liked to keep us fed. I remember this woman as never being bitter. Her smile was as sweet as her apple pies.
Grandma owned a shanty on about 2 acres in the country. She rented it to her nephew for the grand sum of $5 per month. She would get a money order in the mail. When it came, she would hand it to me and tell me to go to the store/post office and buy her a book of stamps and I could have the change for pop and/or candy. As a ten year old in '74, I knew rent for $5 was really cheap. The first time I saw the place, I thought "Yep, $5 is about right."
The place had and still has to this day - no running water - and outdoor toilet - a pot belly stove for heat. I actually have a distant cousin still living there. The place is so tangled in heir ship that it will never be sold unless the taxes go unpaid.
Anyways, I thought the experience would be similar with having my Mom live with us. The problem is Mom ain’t grandma, I ain’t my Dad, and so on. Grandma was in decent health while I grew up. Mom has COPD and diabeties. One the things I failed to take into account when having Mom move in was how my wife would feel about all this. She seemed ok upon early discussions prior. I now realized that while I was being the great servant son to Mom, I had neglected to let my wife know she is first. I have been working on correcting that. At one point I was on my wife over to my brothers house to not ask but demand that he take Mom for awhile. My wife upon learning what I was doing asked why? I said to save our marriage, to give you a break, and to let you know you should come first. Her response” Don’t go to your brothers. I know you want to take care of your Mom. I just wanted to hear that I was important".
Hence, my thick skull finally got it. You assume that everyone knows and understands where you are coming from. Not always the case.
Christina, regarding what I said about my Mom’s estate last night, when I read that tonight I think it sounds pious and full of shit. Yes I am trusting God regarding these things but the real truth is. Not including her home. Mom may have about $30,000. We spoke with an attorney a few weeks back. He confirmed that giving her estate away would keep it from being used, AFTER FIVE YEARS. The problem with that is one she has to not need NH for five years, which is an unknown. The other thing is that all recipients would have to not spend it during that time. I think I could handle not spending it. Not sure I could say the same for my brothers (God love ‘em). So I figure while Mom is here I will use her $$ for HER needs. Whatever is left will be disposed of according to mom’s will and wishes. So when I say I am trusting God, I don’t wanna hide behind that so much as to just say that I am really feeling like “screw it! What ever happens, happens! “ That is really what I should have said because that is closer to the truth. I don’t want to stress over 30K. It ain’t like we are Rockefellers.
We journey forward and hope for the best. Peace to Cattails, Bobby, (woohoo) Christina, and Cricket.
Siempre del Corazon,
Christina co
Christina, try sneaking a granny cam or spy camera in the room and attaching it to the bottom of the TV or some place where it won't be noticed.. (I would do it just for the pure fun of doing something sneaky) anyway it would allow you to see what goes on (I think).
Cattails, thanks for sharing your story! Jen YaY ٩(͡๏̯͡๏)۶ YaY Happy Dance! Igore, I found my BFF here and isn't it wonderful?! Bobbie, I really enjoyed reading more of the story about the boat angel and you are an amazingly awesome lady and I can't wait to meet you! Kimbo, dang I hate when I post and it gets deleted! I will look forward to your next post... do what I do and copy your post before you actually hit the submit button so it it doesn't go through you can close and reopen the website and paste and post over. Welcome to the newcomers! Blessing to Diane, Rossella, Shirley, Linda, and anyone I might have missed.
Cricketღ
Great to see the Captain here for a full update. Glad you got in a day of fishing and I enjoyed hearing the story of Boat Angel:) bless both your hearts. I continue my prayers for healing and mercy. The human will with motivation struggles for
Survival, and Love is that motivation. Love you Bobbie. Xoxo
Igore, yikes, I often blurt out choice words at times of exasperation. A thought will
pop into my head while I am vacuuming, and as it processes, I can hear myself utter "Oh crap", and to an innocent bystander, it might appear I was having a fit.
Haha! We have random thoughts and conversations with ourselves which can lead to an expletive. Sounds normal to me. Haha! Your Mom is blessed to have you, good boy, and I think it's great to trust God--I do-- but He also created Laws, do protect her/your assets. I also think cattails is a good friend. There is nothing better than to connect with someone who understands, supports and accepts you. When you are interacting with like-minded, compassionate people who care enough about doing the best they can for a relative, and then want to learn more and support others--what do you expect. That's why I say "WhooHoo" all the time. We'll have our mansions in Heaven on the same block and won't that be fun?!
Thank you, Shirley, meanwhile back at the ranch, for your input on Mother. She tried to tell me something yesterday that was bothering her, but no way could she get the words out. I tried to calm her down and say the words I could figure out so maybe she would form the next word, but it didn't work. I sense there is frustration in her yet. All mobility is gone, but she has good appetite and no problems swallowing. I fed her a whole peeled, sliced pear yesterday and a piece of chocolate; she enjoyed it all. I tried a different technique in speaking with her yesterday and she was more alert. She replied in a way I could tell she was keeping up and understood. I guess it is hit or miss. I equate it to a solenoid burning out. My hyper awareness makes it a tough thing to endure; every subtlety is amplified with me. Exhausting. Anyway, that is why I must always have detailed intense projects going on to distract me. Don't tell me what's wrong with me-- like I'm autistic or a savant. Don't think I could handle it. I don't do math, so forget it.
Sorry, didn't mean to go off. Oh look, I'm venting. Heehee
Got last minute studying to do, so I'll sign off till mañana.
Keep bonding and venting: It is the glue and breath of life around here.
Love you guys. Have a great day. Christina xo
New development....MIL is a binge drinker, she continues until she gets hurt. As per most folks with this issue she is in denial. She fell a week ago and hit against the kitchen cabinet. 41 staples in her scalp, 3 stitches in eyebrow and a broken wrist. Says I dropped a piece of ice and she slipped on it...wonder when the last time I got something out of that freezer....a week ago at least....she got tangled in the walker and lost her balance and down she went...thankfully I was close by. As with head wounds blood all over the place funny part was she was at the drawer with the kitchen ..handy anyhow.. EMT 's had fun trying to figure out how to get her out of the house as the walk areas to the door are too narrow for the stretcher!! Not to mention she is grossly overweight!! So much fun...they said she was very happy and cheerful during all the testing and putting back together! No Wonder with all the booze in her! As soon as we got home she popped 2 pain pills and had a glass of wine! Any Ideas as to how to deal with a binge drinker....???? At a loss
Cattails, the Boat Angel is a man I only just met about a year ago. I bought this boat after my mom died and after being her caregiver for dementia for 5 and a half years. Incidentally, mom had all of the issues that Christina's mom and it looks like your mom had.
I know that my mom and I connected though but that didn't change the behavior of her sitting there and staring and glaring at me and the fact that no matter what I did it wasn't enough and blah blah blah. So I guess that's why I and so many others can relate to what you are writing.
Caregiving anyone who is out of their mind is an insane job, period.
Anyway, back to last year. I met this person at a boat yard, a wonderful place for boats, very high end with many gorgeous yachts and then of course there's me and my boat... not a gorgeous yacht but a good boat.
Before he was the Boat Angel, he was just another boat guy, staying on his big yacht and hanging around the yard. The people here had known him for over 20 years and told me that he was pretty good at problem solving on boats in the engineering sense and that he used to have a very successful commercial heating and air-conditioning company. That was good for me since the ac units on my boat needed work.
Big boats are very expensive so the yard boss said I should go and talk to this guy to get some ac answers and figure a way to bring the costs way down.
Now before this, he had gotten my attention when there was an altercation in the yard where one of the captains was yelling at me and swearing up a storm. I am used to settling my own hash but was amazed when all of a sudden this 6'5" redhead stepped between me and the yelling captain and put a stop to it immediately. That was the first time I have memory of seeing him and that is also the first time I saw a born and bred Southern boy in action.... aside from my daddy who was from NC and was a gentleman through and through until the booze got a hold of him in the early 60's.
So this big guy takes his time and starts to come to my boat to have coffee... as in, 'would you like some coffee?' 'I will if you're having some...'
so this starts to be a habit where he is coming every morning and sitting for an hour. pleasant conversation and it's all about boats. By this time I was in the ending stages of a long term relationship but the last thing I was thinking about was involvement with anyone, much less this guy who was younger and pretty good looking and what in the hay could he want from me but some coffee and boat talk and I was way cool with that.
OK, so I go back and forth to NJ to settle my mom's business and close the house after endless estate sales and he takes care of my boat while I am gone. Fixes the ac units to where I have a boat that can be cold enough to hang meat in.... paints the engine room, does this and that. Fixes stuff and doesn't tell me so I end up discovering it working properly, etc etc.
By the mid summer last year, he had discovered the melanoma on his arm and they gave him radiation and chemo and after a few months of that his cancer went into remission.
By this time he was on my boat every morning for coffee and every afternoon for iced tea. And by then he had told me of his cancer and I was concerned because his diet was crap, he was ingesting so much sugar over the course of a day... Sweet tea, cokes, fried stuff... that I spoke up and said that if you want to stay in remission you have to change your diet. Ya well we all know how that goes...
Now we were still boat buds in the sense that there was no romance there but that changed when I came back to the boat in July I think to take a break from the estate sales and the sadness in NJ. I drove 13 hours to get here and got pounced on. I alternated between being freaked out and liking it and decided to go with liking it after a long time of figuring it out. I didn't really want a relationship with anyone but here's this boat guy who knows how to handle all the systems on this big thing (the boat haha) and he's nice and likes me and we have a pleasant time together so why not?
I left for NJ for the last time which took almost 3 months and then came back to the boat to find little things squirreled away.. like a Magellan pocket navigator.. new dock lines, and my bed fluffed up and turned down like at the Waldorf. Well damn.
We were just moving into the omg this is going to be amazing part of the routine when he went for routine blood work and it came back abnormal. A few days later he went again and his white counts were off the charts. He went in for the cat scan and mri and they discovered that the cancer had spread from the original site into his lymph system and was Everywhere.
He started chemo again and radiation but the cancer had a tremendous hold. I went online to learn that melanoma that has spread to lymphoma has a 7% to 14% 5 year survival rate.
He came out of the hospital and moved into the boat with me. I put him in the double cabin so he could sleep and be peaceful with the boat rocking and I began to cook macrobiotic food and make organic juices for him to help the healing from the chemo and the radiation and to see if he could get his white counts down.
He has very little interest in not eating the way he should and I am way too tired from already doing my time as a caregiver for my mom and never having the time necessary to heal from the PTSD that comes from long term dementia caregiving before being thrust into another situation that was full of stress and grief.
I do my best. When he is here on the boat he wants for nothing. He is cared for and well fed with healthy food and juice even though he begs for a pizza now and again.
I however, am not doing so well in the fact that I live in a world of perpetual grief and sadness and only with him away for almost a month now have I begun to laugh and take part in my own life.
He is due back to the boat in less than a week and believe me when I tell you that I have mixed feelings about the whole deal. No one can be as selfish as the dying who figure that they are not going to be around so do whatever you need to... My mom was like that and that was why she left me a nightmare of shit to deal with.
The Boat Angel is the Boat Angel because he helped fix and save the boat from undue costs and time but I do think that my debt has been paid tenfold and we shall see how this all will transpire. I don't think that me being a caregiver again is what is good for me and I have to do what is good for me or this shit will kill me.
I almost died from taking care of my mom and her precious 'things' and I need a break.
So Cattails, there is the long winded answer as to who the Boat Angel is.
Welcome to all of the new folks who have posted and I am off to deal with more boat stuff today.
Love all of you guys more than you know and thank you everyone for being here.
lovbob
"Potty mouth!"
"Whaaaat?"
"You and your cussing, Who are you cussing at?"
"I don't know"
I am not sure if this may have something to do with a brain anuerysm she suffered back in '93. She cussed some before all that but that random cussing at no one seems strange. Elderly turrets?
Anyways in other aspects things are good at home. When I read what some of you go through I realized I am a rookie at this. Mom is ambulatory and of reasonbly sound mind. For a long time I went through a lot of crap trying to decide whether or not to try to "protect" her estate in the event she needs to go to a care home. I have concluded that I am going to trust God and let what happens happen. If her assets have to be liquidated in her final days then so be it. In the meantime she has decent insurance (retired from state government)
Christina, I get what you mean about the someone being to perky. I don't mind someone being upbeat but phony kinda pisses one off.
Cattails you are my bestest new friend and I ain't afraid to say it. I emphasize with what you are going through with your Dad. I pray for comfort and peace to you and your husband in the days ahead.
Bobbi, I bet the boat Angel would be happy you went out and had a good time.
Jen!! way to go! hey there, wanna be a boat engineer? If you can change a faucet.....!
cattails! ya, just write it all out and get it off and out of you. It really helps and it has really helped me personally no kidding. These people are the reason I am not institutionalized....
Boat Angel still in hospital with dialysis and that one last chemo. He had that and now it's just about getting his kidneys well enough for him to leave.
I am sorry to say that I have enjoyed the respite and went offshore fishing yesterday. We were about 15-16 miles off the inlet and in the N Atlantic and it was a beautiful day. There were 5 of us and they baited me up a pole but with the ADD that lasted about 90 seconds until I figured out a way to put the pole in a rod holder and still see it from the salon so I could keep an eye on the pole and watch the History Channel. I haven't seen regular tv for about 18 months so that was great. I lay up in the salon in the shade watching my pole and when the pole got a strike I would yell until someone came along to handle it. Everybody put up with me and with the boat rocking on the hook I slept like a fat baby.
Today I topped off the fuel tanks which meant that I had to move the boat to the fuel dock. Big production that comes with a lot of chop busting from the guys in the yard. No one likes the fact that I have a single screw and that it's way harder in close quarter handling than a twin but hey... eats way less fuel so there you go. The boat I was on yesterday took 700.00 of diesel just to run less than 10 hours. The boat owner was very gracious in the fact that he didn't whine about it and want us all to chip in. Whew.
Had fun driving this boat even though it is scary at the same time. At least I don't have the nickname 'Crash'. the yard guys gave that honor to another new boat owner who pulled to the dock yesterday, hit it, then threw the bowline off the boat to the dock, jumped onto the dock and then fell off the other side all the while the boat was still in gear, his dog was barking and all general hell was breaking loose. Nobody died and the insurance company didn't have to show up so all in all it was a good day for ol 'Crash'.
going to watch another Mad Men on Netflix. Love the Netflix.
It's good to see everyone here, love you guys way more than you'll ever know.
p.s.... Jen, there's a HUGE joke about white men... it's called Congress.....
lovbob
My mind has gone blank, so I'll sign off for now, good luck to all..ssk
First, Jen!! You are so amazing!! WhooHoo! Did you use plumber's tape and channel locks? How is it today? Very proud of you and your creative and practical talents:)
Kimbo! How did Hannah do? I bet she was smiling the whole time! Go Bragh!
Big storm gave us only 2 out of 4 days and only one segment was fierce, then we got 2 seconds of tiny hail. That's California weather. Today I had to cut a shrub down I was training on a trellis. Oh well.
My Mother has been very unresponsive the last week, not even smiling when I walk in and tell her I am there. She blabbers and was having bad dreams yesterday. I think they were dreams. Can't understand her when I ask what it was about. She has bruises all over her arms and back of her hands and her shins. What the heck is that from? I have asked the caregivers. They do not understand the question, I have asked the owner's assistant, she is a bit too perky for me in that position. Phony. The doctor does not call me back. How do we know if she is in pain? Why the hell do they ignore me? What do I have to do at this point? If anyone has any ideas, I would appreciate it.
I hope all is going well with those of you who are caregiving, like sleep and youtime, from your charge: kind words and behavior; I hope those of you beyond caregiving are feeling proud of the love and devotion you gave your parent. I pray each finds peace and new directions to fulfill those empty spaces.
Wherever you are, take care of yourself. Have a great week. Love, Christina xo
I thought you would want to know about this
e-mail virus. Even the most advanced programs from Norton or McAfee cannot take care of this one. It appears to affect those who were born prior to 1960!!!
Symptoms:
1. Causes you to send the same e-mail twice. Done that!
2. Causes you to send a blank e-mail ! That too!
3. Causes you to send e-mail to the wrong person.. yep!
4. Causes you to send it back to the person who sent it to you. Aha!
5. Causes you to forget to attach the attachment. Well dah!
6. Causes you to hit “SEND” before you’ve finished. Oh, no not again!
7. Causes you to hit “DELETE” instead of “SEND..” And I just hate that!
8. Causes you to hit “SEND” when you should “DELETE.” Oh No!
IT IS CALLED THE “C-NILE VIRUS.”
Hmmm…..Have I already sent this to you, or did you send it to me?
I urgently needed a few days off work, but,
I knew the Boss would not allow me to take leave.
I thought that maybe if I acted 'Crazy' then
he would tell me to take a few days off.
So I hung upside-down on the ceiling and made funny noises.
My co-worker (who's blonde) asked me what I was doing.
I told her that I was pretending to be a light bulb
so that the Boss might think I was 'Crazy' and give me a few days off.
A few minutes later the Boss came into the office
and asked, 'What in the name of good GOD are you doing?'
I told him I was a light bulb.
He said, 'You are clearly stressed out.'
Go home and recuperate for a couple of days.'
I jumped down and walked out of the office...
When my co-worker (the blonde) followed me,
the Boss asked her, '..And where do you think you're going?!'
(You're gonna lovethis....)
She said, 'I'm going home,
too. I can't work in the dark.
Last night the dogs found a skunk in the yard, you can guess what they smell like this morning. But, they killed the skunk anyway. This morning they are slinking around looking guilty. I guess they know a bath is coming.
Take care, Love Shirley
I have seen in my family that the males with addictive or absent fathers repeated the roles. The women did better, improved the quality of everything, from husbands to mothering skills. We had a strong matriarch in my grandmother, but she was a ball buster ( pardon my French, Cuz and Igore). I saw the family dynamics intensely as a small child, and despised her lead. I spoke up all the time and stood alone. Funny how a little girl with no support continued in that modus operandi, but we are who we are, I believe, and we navigate in these families, like sperm going to the egg. The strong ones make it and the weak ones die off. Theory of natural selection, in a way. I am still not quite sure what life is all about, but we plod on, one foot in front of the other.
Hope you all have a pleasant Sunday. Blessings and Love to All, Christina xo
Everyone: It such a heart breaker to how AZ can take a toll on our love ones and on us as well as a caregiver. I hope someday they will be able to find a cure for such a devasting disease. I hope those who are going through such heartbreaking times to find some sort of peace within yourself and try to find one small thing to help enjoy life. I am going to try and enjoy the weather and take a big breath of fresh air today. I hope everyone has a nice day today or at least a few minutes.