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.
I haven't been on here much lately and I won't be rushing back. Who has time to weed though all the spam?
One spammer who had posted two threads of spam tried to claim one of them was not spam.. Not!
My father came down at night with his shirt both inside out and backwards, this got us both laughing. The next night he came down with only one slipper on. When he spilled the lemonade he used the foot without the slipper to wipe it up with the paper towel. It was midnight or so at that time and I had just finished cleaning the kitchen and putting out the trash a few minutes before. The night and day before the talking fire alarm went off numerous times until my father finally pulled it off the wall. All this while my bedridden mother tried to sleep through the noise in the room next to the kitchen and tell me that I could just sleep in her bed if I was too tired to go upstairs. I had to smile at her kindness as she also invited all of the care takers that stopped in during the storm to stay over as well.
My mother is on hospice and my father is her primary care giver. I stay over at their home 4 nights per week, my sister stays twice, and my brother once. My father's desire to provide for my mother and his desire to not burden myself and his other kids far outweighs his ability to fulfill that desire and at times he doesn't recognize that. He therefore does more than he should and then later pays the price in pain and lost sleep. It is bitter sweet as I watch at times with frustration and at times with sadness the decline that is happening before my eyes.
The property we bought next door has water in the garage not all from melting snow. Grrrr"........
They are rather predictable since they don't tend to come out until after 12 am eastern standard daylight savings time. Well, I see it is time for another night for fighting the spammers!
We have enough to deal with apart from these spammers.
It's great that you and your father can still chuckle over things like wearing the shirt inside out. It does sound like pretty soon your father is going to need someone to be there with him. Either that, he's so stressed out, that he's forgetful. // I'm also sorry about your mom. And most of all, I am soooo glad that your siblings are helping out. That's so rare to read here on Agingcare. Kudos to you and your siblings.
FYI, after I posted in that spam thread, I reported myself...so that admin will know it's spam.
Okay, due to the auto expense of last year and my tires, I have spent $1200.00. I've had to touch my emergency savings. Thinking long and hard, making a decision - which resulted in my feeling very depress today, I have decided that I cannot go on a trip this summer. My tax refund will replenish what I've touched.
Last week, a client came in, and started to talking to my boss' wife and me in our native language. I like 10% understand what he's saying. In the past months, so many have been speaking to me in our native language. And I was too ashamed to tell them that i don't understand. I've had - in the past - Several people tell me, "Shame on you! For not knowing your language! No Excuse that your parents never taught you. No Excuse." Unfortunately, growing up, we always knew when our parents were really angry - was when they started to cuss in our language. other than that, it was English only household.
I've been searching our local bookstores looking for CDs or DVDs on learning our language. Tonight, I was watching our local channel, when they had a show teaching us the language. Except, they spoke sooo fast, I got lost fast. So, I googled it. Previously, I googled using 'CD or DVD'. Tonight, I just googled without it. Bingo!!!
I have watched 2 YouTube videos. Speaking our language is like speaking in tongue twisters. My tongue just cannot roll the 'r's or multiple pronunciation of one word. I have replayed the video over and over, even in slow motion. finally gave up, and asked sis. She told me - so fast for my ears - I asked her to write it down. Even reading it - is so difficult for me to pronounce it. "Kumekelekna". I gave up..
and went to counting up to 20. So easy. Uno, dos, tres, kuatro, singko, sais, siette, ocho, nuebi, Dies, Onse, dosse, tresse katotse, Kinse, disisais, disisiete, disiocho, disinuebi and bente. sigh... But counting isn't much for learning one's language. So, I will now go change dad's pamper, and google some more....
The rule for autos is that when your repairs cost more than the payments for a new car it is time to get a new one.
In my case, I would like to learn the language of my ancestors, but that is going back 125 years to when they immigrated to this country. It was one of the top priorities of my great grandparents to speak English in the home; their children to grow up in an English speaking home. I have only one relative that knows the language of Norway and that is only because she took many, many college level classes to learn it.
Times sure have changed!
Glad, when the Japanese invaded our island, they enforced a 'Japanese' speaking only. From what I understand, if you don't want to be punished, you'd better learn their language fast. My mom never spoke of those hard times. But I heard from a relative that she was slapped several times. My dad one time mentioned our people digging the hole, then told to kneel in front of the hole, and then have their heads chopped off with the machete. My dad also spoke of the time when the Americans were bombing the island, to take it back from the Japanese. He said that our people were marched from the concentration camp to isolated areas. When our people realized what was going to happen, they decided that trying to escape was a better chance of survival than following to the end - which was a sure death. My dad was one of those who realized this, as a teen, and fled into the jungle. He said that he thought one of his friends who also fled was hit by a bullet and must have died. Oops.... sorry... getting off topic here... What I was trying to say is that, after being freed from the Japanese, the Americans took over. All the schools - were mandatory English only. I guess our parents carried over this discipline in the home.
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.
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}}}
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.
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.