This seems to be a question that is not asked enough or we think what we are feeling is not as important as what our loved one is going through. This job we have taken on is a tough one and there are days when I think my "stress rope" cannot be pulled any tighter. Then there are other times that make those bad days just a memory. Do you feel like banging your head against a wall one day? And then the next day your loved one is attentive and loving and comprehends whatever you say? There are some who keep those feelings bottled up within themselves; others take the time for outside resources and others who look at sites such as this for some understanding. I do better when I have someone else to bounce my feelings off of. Let's face it....we aren't superhuman and besides ourselves and perhaps a family to take care of we now have taken on the responsibility of another human who is incapable of taking care of themselves. Do you breeze through the care giving without a problem? If so, I would like to know how you do it, maybe you can offer some new ideas; do you have feelings of frustration and need to talk about those? Come and talk and know that you can speak freely and without judgement and without finger pointing.
I am caring for my mother-in-law and have been for about 1 1/2 years. She has moderate dementia and incontinence. Other than that she is very healthy. Sometimes that short amount of time feels like 10 years and I wonder how long I will be able to do this job. I get so very tired of hearing the same thing day in and day out, but I have to remind myself that to her, each time she sees me, she is offering new information. At times I have no problems communicating with her, but it seems like more and more she cannot retain a thought longer than 5 minutes. We have had to make signs for her so she will know what she can and cannot do. So far it's working, but for how long? Maybe I will have to end up making her a "Book of Do Nots". She is on memory drugs, which don't seem to make a difference. So why do I continue to dole them out to her? I guess I'm afraid of what might happen or how she might act without them. I might have to rent a boat or buy a helmet! Sometimes I see something in her that leads me to believe that she could get aggressive and what would be my reaction to that? At the end of each and every day, after she is tucked into bed, I breathe such a sigh of relief. The "inner beast" is quiet at last, or at least for a few hours.
Pull up a chair and visit........I would like to know how you are coping everyday..be it good or with handfuls of stress.
My mother's hospice nurse was at the house when she walked and it was so hard afterwards to watch my father totally break down. He has been her caretaker for these past few months and soon he is going to be the one needing care and my mother's care will be cut back.
I remember one time, the govt and the weatherman said that this one storm was going to be a banana storm. Well, at the very last minute, this banana storm got stuck in the ocean and did not move. As it swirled in one place, it continually gained strength. By the time it started moving, it was a snail's pace. By the time it hit our island, it was a major typhoon. Most of the people did Not Prepare for it - thinking it was a banana storm. Because mom was bedridden, we Always put the shutters up. We were very fortunate that we did. Since then, no matter if it's going to be a banana storm or not, most people now prepare as if it's going to be the big one.
Cmagnum- thanks for posting me..I tried to post back but my stupid computer freees for some reason when I do that (have tried twice now) anyway, I am doing ok. still have major family issues going on and we just passed the anniversary of my fathers death...still tender...but am happy that I still get to take care of my mom. She is such a sweetheart, I feel so fortunate when I hear others on here talking about their combative parents. I suppose my dad would have gotten that way over time so I think God spared me...we had a few run ins before he died that still stick with me even tho I know he wasnt himself then.... hope all is good with you.
SherylBeth - I would say to you the exact same thing that Bookluvr said.. get POA, mom's wishes, medical POA all in order..as she slips further from you, you wont be able to get it.
Since your mom is still considered competent, does your mom have in order her medical directives? DNR (Do not resuscitate) or no food tube or hooked up in the machine? How about medical and financial POA (Power of attorney)? I have found that my dad will only listen to someone of authority (doctor, nurse, social worker.) It was dad's social worker and the doctor that he get guardianship over mom. The social worker also discussed with him about DNR and he agreed to do it for mom. (But not for himself. He's afraid of dying.) It's very important to get someone Outside of the family who has 'authority' to discuss these important stuff with your mom. If she's like my dad, she will not take you seriously.. or think you're up to no good (and steal their money.)
I was able to do the last of dad's laundry. Swept our front porch from all the blossoms/pollens of the mango tree. Why sweep it before the storm? Because I'm allergic to mango - and I do break out into large hives (looks like gigantic mosquito bites). I figured to lessen as much as possible the blossoms in our porch. Soon, it will be flying into our sliding door, front screen door and front windows.
I've decided to cook a whole pot of rice and some kind of heavy meal (not microwaveables or tuna sandwich) to last the whole day for sis and I. Of course, whatever I cook, sis will not eat since our tastes in food differs a lot. I think I will make spam with green beans, tomatoes and corn thrown in. It'll be more towards a soup since I will add more water to it. Then I can scoop the soup onto my rice.
I've taken out the kitchen trash, the pamper trash...After this, I will go hang his clothes on the porch while it's still very windy. Hopefully it will dry enough before the heavy rain comes down. Just dry it enough so that I can bring it indoors and strategically hang it all over the place.
I've had to recharge my 2 cell phones, the iPad's done. The kindle is recharging.
I think I have everything covered - except my car. Okay... Later. I also have to figure out my budget and start writing check payments towards the bills.
Floaters in eyes are permanent-they never do away. Your brain can get used to them. Looking at a sunny day can trigger them. I have had them since last June in my left eye and yesterday in my right eye. It looks like those pictures of a red blood cell and moves all over the place. The left eye usually had a squiggly line or a faint round outline. It's so annoying as book said I always think I see something now on my far right line of vision.
Tomorrow morning, I will be moving my car up the hill - where flying debris can hit it. But I'd rather chance it than down the hill where our house is located- and get flooded. We live close to the base of the cliffline - down the bottom - where both the main road and the cliff's waters drain down to our house. We literally live in the flood area. Yes, I've already put all of dad's pampers and tissues up on the bed. Hopefully the bed will be high enough. Tomorrow, I will go to my bedroom and put all my shoes and boxes of books on the floor - up on the bunk bed. Hmmmm. I think I will also put his pampers/Charmin up there, too...
I've done my laundry this evening. Tomorrow, If the rain/wind is not so bad, I will go and do one more laundry of dad's waterproof bedpads. I don't want to get electrocuted for using the outdoor washing machine while it's raining. We will see. I need to go recharge the kindle, iPad and Nook tonight. In case of power outage, I can at least read it in the dark - unlike a real book. What else??? I bought a case of bottled water, bread, baby wipes... I think we're all covered. I didn't have to buy batteries since I bought a whole bunch from the last storm warning.
There goes all the mango. That storm is going to knock out all the pollen/blossoms that are blooming all over the mango trees island wide. I was driving today and spotted so many mango trees everywhere. It stands out because all those blossoms/flowers. But, the good thing about these strong winds is that they also clean the trees of those pesky bugs that leave white stuff on it (aphids?). And turning the mangos black while still hanging in the tree. Our people usually smoke the trees but ... because we live in an area surrounded by apartments, we cannot burn fire under the tree. People will complain of the smoke. So, the next best thing is a nice strong typhoon-strength wind.
There was one year that these Flame trees were infested with these small fast moving worms. These worms dangle from the tree (on a web?) and crawls all over the place. I once was walking in a neighborhood. When I saw the flame tree, I knew there would be worms. Sure enough, they were crawling all over the ground AND... OMGoodness, they were all over the front walls of the house where the tree was located. I have never ever seen that before and even after - of so much worms crawling all over the walls. {{{{shudder}}} A few weeks later, we had a typhoon. It denuded most of the leaves from the trees. And all those worms - islandwide. The trees still get those worms but not as badly infested like that time period. Time to give dad a drink and then off to shower.
I first thought it was hurricane Pam but found it is another one. Hope you are not too low in elevation and stay safe. Don't forget to put on your rain coat before you go to the bathroom. guess you are used to this kind of weather. My hubby would be having a major panic attck if he was there. A woman my Mum worked for was so terrified of thunder storms she would take a candle and hide in the cupboard under the stairs. Don't know if it was a co-incidence or not but that is where the liquor was kept!
White tea, oolong tea, green tea and barberry tea. I've only heard of oolong and green tea. I couldn't find white tea and barberry tea today. I bought today the oolong. I found a mixed tea with ginseng, green tea with white tea. I had that just after dinner today. To me, I thought I was drinking a perfume tea. But I forced myself to drink it. Towards the end, I got used to that perfume tasting tea. I guess that's the ginseng? I had a slight tingling of the tongue. I've decided to not drink this tea tomorrow. Instead, I will try the oolong tea tomorrow with breakfast. I will see if this also causes the tongue to tingle.
I was thinking of replacing my ice coffee with tea. I can make tea the night before, put it in the fridge. The next morning, I can pour some in my hot/cold thermos to take to work. I won't have caffeine withdrawal.
Except I just read this WARNING: on the green tea. That you need to be careful if you have a bleeding disorder. I can no longer take Motrin because my nose starts bleeding. I hope this is not going to be the case with the green tea. Well, I don't think I've yet to acquire a taste for it. So, it's not like I will miss not drinking it.
Ohgenny, I can see your father's viewpoint. It would really reassure him a Lot to be able to make that move while he's still here. It will help him a lot to know that his wife is much closer to family who can help her. He's a very strong man.
Mallory, once you have answered, the thread/discussion automatically will appear on your NEWS FEED whenever someone posts in it.
I came home late at 7pm. Sis took dad's dinner plate with the pizza crust still on it. She left it on the kitchen sink. I guess I'm suppose to empty that pizza into the trash and wash his plate? I left it on the sink. I caved in recently. She dumps the food wastes in these plastic bags. For 3 days, I can smell maggots soon-to-be-coming. I finally caved in, disgustedly tied up all the plastic bags and dumped it in the trashbin. Sis won again. Veronica, you are right. Sis will not be emptying the sink strainer/drain. I've been doing it every night. Every time I come home from work in the evening, it's clogged again. I'm really really trying my best Not to let it get to me.
I want to cook some of our native meals. Except I don't have the extra money to buy grocery. I so wish sis will go and buy food that I can prepare. I Always make meals in the weekends to feed both of us for the whole day. Sis only cooks for herself. We're running low in rice. It costs $23.00 for a 20-lb rice. I was soooo hoping sis would buy it. I guess not. So, tonight, I will check my cash and see if I can spare some money to buy rice. So sucks that she is the way she is. The food I buy is ours, the food she buys is hers. Storm is coming. I need to maker sure to have enough batteries for the emergency flashlights. Gas my car. So many things to do tomorrow.
The name of that thread is "Grossed Out? Need to Vent? Just caught Mom using my toothbrush to comb her hair!"
An offshoot thread from this one started in 2012. "The Caregiver & Dysfunctional Families: How are you doing?" It has 11,109 posts.
One that started in 2014, "My "whine moment today". What's yours?" has 5,649 posts
These four appear to be the most active, long lasting and largest of the threads on this site. I don't see that as any problem.
Anyway, you only have to click on "last" to get to the most recent post.
Six years ago my father had surgery to remove a large cancerous tumor that was behind his bladder. During surgery they discovered that it entangled many organs and his kidney, bowels, etc. were also removed. Though touch and go for a while he recovered beautifully and was told he had about a 5 year extension on life and we are now at nearly 6.5 years.
Last winter was a terrible winter and my mother sunk fast or maybe not so fast. Her eating habits changed she lost weight and dropped from the norm of about 105 down to 89. Every month we took her to a doctor to find out what was wrong and during one of the last visits the doctor "threatened" her with a feeding tube if she didn't start eating again. I blasted him;he got me so angry. My mother had never ever stopped eating. Sadly she had diarrhea for two months and that was why her weight kept dropping. Before taking my mother off of the feeding tube in December her weight still never went back up past about 90 lbs. When all was said and done we learned that my mother's inabilities were a result of stenosis. All the therapy in the world was not going to improve her abilities. That said, it is quite possible that she does not get any worse either, physically she is not declining and has actually improved some. She has also been diagnosed with vascular dementia.
Before all of this started I came to my parents one night to bring some juices for my mom. Some friends helped by making juices that would be tasty, add some weight, and possibly help my mom with her digestion problems. My father told me that evening that he was dying and that he wouldn't be accepting dialysis. I drove home in tears trying to digest this info. The next night my folks went out to dinner with my sister. I called her after dinner to see how their time was and learned that my father did not tell my sister any of what he told me the night before. My sister is older and my parents' executor. How could they not tell her? With my sister at my side I called my Dad and told him we needed to have a WTF conversation as in why the heck did you tell me and not tell your oldest daughter and what is really going on. I finally asked him if the doctor recently told him something about his health or if he's dying as in we are all dying from the day of our birth. Dad laughed and apologized and basically he figured out he was dying because he passed the five year mark. From that point on until this January my father's condition had held steady other than increased pain from his bad knees. He and my Mom were still up and about, still meeting us, no signs of cognitive loss and no signs of quitting.
So sorry this is getting so long but I am really grateful for your kindness and assistance and we really don't know what we are doing and am just trying to give enough info to get the best insight from each of you with more experience than we have.
When my mother came home we figured that this is where they were going to stay . They have lived here in this very house for nearly 60 years. We made this work with my offer to stay as many nights as I could knowing that if it seemed necessary, I would fully move back in. We had aids coming, my father used their times here as his opportunity to get out and go shopping, sit in a diner or do whatever else pleased him.
It wasn't until January that he started to so rapidly decline and our plans to begin changing to wanting to move them. My father's knees are getting no better, his falling started, the car accident happened and the house has too many steps. We quickly moved to seven nights a week coverage and my father made it very clear that he wanted out of this house and out as soon as possible. While aware that my mother may take the move hard and her dementia may make it even worse we still thought and do think that this is the direction to take. She still has so much of her will and spirit and understands what we are doing and why and even asks for progress updates. Our job at this point is to relieve my Dad so he can focus on himself and on enjoying my mother without having to do for her himself. We are installing a lift at my sisters' so he no longer has to climb stairs.
At this point we have no clue if either parent will make it until we are ready. This latest bit of news with my father is just a bit much. While we realize my father could truly go at any time now we also realize that where my mother is concerned that could be true also or she could still hang on for another few years. Her heart, kidneys, liver are all still functioning great. Stenosis is not a diagnosis that has carries a death sentence. That is probably another underlying problem as we never discovered where here internal bleeding came from when she in the ICU. She is off the feeding tube, eats and enjoys eating pretty big amounts of food but ...still not gaining any weight. She's certainly not losing anymore though either.
I managed to have a long talk with my father tonight and asked if he wanted us to hault or slow things up a bit until we know more about his condition. He said he wants us to move more quickly now because though he originally agreed to and wanted to move because he realizes he can't care for the house any more let alone manage in it, he states he is not attached to the house or neighborhood as much as he is attached to us and he realizes that this move will locate him and my mother near more us's as his sister and brother in law will be closer and my mother's sister will also be closer. He now realizes that he wants to know that our mother is safely with us and cared for without the continued burden on us to travel as we are now and doing that quickly will be better for her as she still has the ability to recognize where she is and who she is with. He hopes to make the move with her and if so he really has no expectation to be around much beyond that time.
We are struggling as we realize that every day is filled with uncertainty and way back in February (yes that is my sarcastic humor) when we hatched this plan we were not really as uncertain about things as we are now. I feel like we are at the point now where we can barely absorb one thing before the next one comes yet have to "normalize" everything as much as we can for Mom's sake. These next few weeks will be rough as we have to tag team and triple team to get Dad to all the Doctor appointments coming up while still ensuring coverage for Mom.
Thanks to any and all that actually read this much. We are really new to this care taking thing and are trying to do the right thing with setbacks and obstacles at every turn it seems.
Lyme disease never really leaves your body, it continues to demyelinate the nerves. 80% of ALS patients had Lyme disease history. Alzheimer's is always a guess and can only be confirmed at autopsy. So they treat the symptoms, because there is no cure for the disease of Old Age.
The thing is, Palomita, it was very very difficult caring for mom – and there was 2 of us. How are YOU handling this stress, anger (towards the parents, siblings, life in general), feelings of betrayal (from siblings) ? Please check with the nurse of Other Resources to help you. Talk to your mom’s doctor or Your doctor for resources to help you. This is the thing that I’m worried about: I became suicidal, my dad had a stroke and became bedridden. And that was Two of us caring for mom. Are you caring for your mom by yourself? Just beware – that you don’t want to neglect your health. Wouldn’t it be awful if you had a stroke (like my dad) ? If your siblings cannot even help with mom, what more with their own sister? (THAT is always in my mind.)
Okay, “the house is a mess’, one way to avoid such a mess – per fave sis – is to get rid of Excess stuff. Clear out all those knickknacks, photos, etc… Fave sis has decluttered her home. Then do what I do. When I shower, I pour a cleaning solution in the toilet. After showering, I then scrub the toilet. Toilet – done. After showering, once a week, I spray a homemade solution of vinegar + Dawn soap. I let it soak, then come back later to scrub it – when I go to use the restroom. Shower – done. After eating dinner, I just stack up the pan and dishes in the sink. I then, go to my computer to de-stress. Later, like hours later, just before going to bed, when I’m making sure that the doors are locked, microwave is off, I then do the dishes. By then, I’m not as stressed as I was at dinner time. Dishes –done. When I know that I’m going to be too lazy to wash dishes, then I grab the paperplate and plastic fork to use for dinner. Then I just rinse off the excess food and throw it in the trash. Sometimes, I get so tired of moving something around or it keeps getting in my way – I throw it. Clutter gone – Done. Mopping the floor? Heck, I just sweep the floor. Too tired to mop, up, down, squeeze the mop, up, down, etc… great for exercising.. but not when you’re exhausted and have too many things to do.
Laundry? Ha! I don’t have time to separate like with like, color with color. I throw it ll in the washer. Except for the towels or any clothing that would leave lint on other clothes. I throw in – one wash – my blouses (in laundry nettings to avoid stretching it), my slacks, my jeans, my undies (nettings). My dad’s laundry, I throw in the waterproof bed pads, the blankets, his wash cloths, shirts and pants. Done – 1 load for me and 1 load for him. Okay… that’s what I do to help cut down the house work. {{{HUGS}}}
I don't know how unusual our predicament is but as stated, my mother is on hospice but my father is probably the one close to death. He is going down so quickly. He has one kidney that is failing, can't take his pain meds anymore and now I fear he may be telling me that cancer has returned. My mother came home in October and though the stress of her situation may be adding to my dad's condition I fear it is something much more. Since January he fell asleep at the wheel and totaled the car (he can no longer drive), had a bad reaction to some meds that almost killed him, has had to stop all meds since his one kidney can no longer process it and now continues to fall. On Monday he toppled on an escalator. Finally, after all of this it seems that his body has finally detoxed and what we are seeing is a weak man who can barely handle the pain he is in. His mind is sharp and without more of a diagnosis he is not qualifying for more assistance. He actually gets none right now, my mother does. Of course we can pay for it but not knowing how long things will continue this way is making him a bit crazy about what he can/will pay for and the rehab on my sister's house is costly. He's also quite stubborn and doesn't want many "strangers" around. This is his duty to my mother after all.
My mother, on the other hand, will probably get kicked off of hospice as she is doing better. Still can't walk or get out of bed without the use of a hoyer but is doing better and a real pleasure, an actual hoot, to be with. She was never this fun or silly growing up and now I just want to be with her every minute waiting for the next funny tale or behavior. I am seeing her as amazingly resilient and as someone who has somehow managed to make peace with her situation and new way of being. When she first came home this was not the case and I think she actually wanted to die then. Her changes happened when we took her off a feeding tube and she started eating again.
My siblings are good and I am grateful. I do most of the work with my folks because I am the one with the disposition and knowledge to handle the crises that have been occurring. My one brother we have nicknamed the Phantom as he barely shows up. However, like I do what I am good at he does what he is good at and he is working hard to get my sister's house ready so we can get them moved as quickly as possible. My sister gets my father to his appointments and my other brother stays one night and then gets the shopping done and gets my father out for some fresh air. All in all we are a pretty good team.
Still it is bitter sweet to watch my folks take this journey. They are 85 and 88 and still very much in tune with and to each other. For the past few holidays we have tried to get my folks to not take this road together and yet this is exactly what they seem to be doing. I do understand it is kind of sweet but gosh it is so hard as well.
I hope everyone is well and beginning to feel the spring.