Being a Caregiver
It's easy to focus on everyone and everything other than yourself. In this online support group, we focus on the "i" in Caring and your role as a caregiver -- offering tips, advice and support to help with self caring.
Additional resources that may find helpful:
Help spread the support to more people in need -- Please tell a friend or two. Thanks!
What's New Today
21 days ago
I'm 48 years old and taking care of my 70 year old mother who suffered a series of strokes in September of last year. My mother and I have always had a combative mother/daughter relationship so now that I'm her primary caretaker things have only gotten worse. Some background information, my mother has suffered with bipolar and depression prior to stroke. In addition, she also has abused prescription drugs since I was in grade school. Needless to say and understandably so, she has become even more difficult.
It is not as if she is severely handicapped by the strokes, it was scary and a wake up call or should have been. Oh she also suffers from neuropathy so she is in constant pain and has been for last 4 years or so she says. Doctors are treating her for neuropathy although none of the tests have confirmed she has it. Is it horrible of me to think it is just another ploy to get more pills? Sorry I digress.
She has weakness on left side arm, hand, leg and foot. She can get around with wheelchair, walker or cane however, she is constantly holding on to furniture, walls etc... So she won't fall. Btw she has fallen on 6 occasions that I'm sure of and has many close calls everyday. I tried to insist that she use a walker or cane when she came home, but she refused. I worked hard to get her home physical therapy because she refused to go outside the home and she pretty much blew it off. Refused to do exercises except when therapist was here. For me there was always an excuse or a huge fight or the accusation that I'm trying to control her. She started physical therapy again last week, the therapist insists that she use her walker not only for safety, but as a tool to strengthen herself and train brain to walk again. She is doing great at excercises this time, but using the walker...it is a challenge. She will not use it, I will remind her she needs to use it and then it becomes a battle. She'll put it away and refuse to use it as some sort of punishment. I try to explain that it punishes her more than me. I only lose peace of mind, she hinders her recovery. Once again, is it wrong of me to think she does it on purpose for attention and to punish me? I was always her punching bag both metaphorically and literally perhaps as much as she hates to give up any control to me she loves the feeling that I feel obligated to care for her and help with her recovery, no matter how unhealthy it is for both of us.
Then there is the matter of her medications and pills, as I said before she has abused them most of my life. First there were diet pills, then sleeping pills, then pain pills, and then pills for anxiety. There were prescription drugs and over the counter drugs. Thank God, no illegal drugs or alcohol. She finally stopped taking the diet pills which she took for nearly 30 years from a series of quacks about 12 years ago however until the stroke she never stopped taking any of the other pills. So at least I don't have to worry about the diet pills, except when she threatens me once a weeks that she could now order them online and have them shipped to her. My mother is not overweight and hasn't been for decades upon decades. Once again I digress, sorry.
My mother has suffered from severe hypertension for many years, she was on blood pressure pills prior to stroke. She was on diuretics due to severe edema for years in legs, this was before neuropathy. Now the uncontrolled hypertension was the cause of the edema and the severe uncontrolled edema lead to the peripheral neuropathy. Remember I said she was on medication but also use the term uncontrolled.
For years my father has had to lock up pills from my mother. All pills, because she abuses everything. Every day he would give her, her allotted number of Vicodin and Xanax, her Ambien for bedtime, her bipolar medication, blood pressure pills, diuretics, etc... He organized them for her so she would know when to take them and so that he could make sure she took them. He would lock up everything, however she picked up the pills from pharmacy and somehow the pharmacy always shorted the bottles. My father isn't a fool, just doesn't want a confrontation so he would let her get away with it. He isn't a fool, just has no spine when it comes to her somewhere down the line he just stopped standing up to the woman. So there would be all these extra Vicodin, Xanax and Ambiens and then she would go through roughly 150 over the counter pain pills every two weeks, about half that number in the same brands nighttime equivalent in the same duration and about 6 to 8 over the counter sleeping pills every night in addition to 1 to 3 Ambien every night. Mixed with her other pills and bipolar meds it was an adventure. I walked in the kitchen one day to find her standing at the counter with a butcher knife trying to cut the dish drainer. I knew it was drugs, my mother and father tried to convince me it was early signs of dementia. Yeah, drug induced dementia. I'm the only person to call her what she is an addict, everyone else makes excuses. Me I know it is all about the pills.
So anyhow last September she suffered her stroke. Not gonna lie, it was scary but I knew the hospital needed to know what medications she was on and how much. Yeah, the cat was out of the bag. But even worse as I started to go through drawers, hiding spots and purse I not only found all what I refer to as her "fun pills" but her blood pressure pills, diuretics, bipolar meds etc.. See she was stashing (hoarding) the fun pills to take at later times, but she wasn't taking the pills that were possible life saving pills or treating severe issues. The result a stroke and peripheral neuropathy.
So now she's home and guess who's job it is to not only control my mothers medications but give them to her? That's right folks! Me! She is constantly trying to get more pain pills, Xanax or Ambien out of me and my father. "She hasn't given them to me yet." "She is punishing me and not giving them to me." "Blah, blah...blah, blah...blah blah." I'm on top of it and log everything I give her. My dad...poor lovable sap falls for it. She never knows what time she last took her Lyrica for her neuropathy or remembers when I last gave her her blood pressure meds, but she sure remembers every 6 hours she gets a pain pill. So when I scold her for getting a double dose of her Vicodin or Xanax and that now she has screwed up when I can give her the Lyrica or other meds because some can't be taken the same time as others (she is on a strict schedule) she gets mad and refuses to take anything.
She gets mad at anything with me and she won't take meds. On a daily basis at least one time per day, I have to beg her to take her pills. There is a battle, etc...
Today it happened again. Says she's an addict and should take anything...including blood pressure, etc... This time it was because she stole a Xanax from my father yesterday and was confronted. So she is 2 hours overdue for her blood pressure pills, her physical therapist is due anytime and I'm writing this post instead of fretting about her. Although, I am. I feel guilty that I'm not begging her to take meds because what if she has another stroke today? I'm worried that if I'm not with her and her physical therapist I won't know what exercises she needs to do and it will hurt her recovery.
Look I know, my mother and me have a dysfunctional relationship and I'm probably the last person who should be taking care of her for my own sanity. But I truly believe I'm the best person to take care of her for her. Because left to her own, she'd only be getting worse or dead already. My father...he has his own problems, my brother is another problem and little to no help and she won't go into a home and if we hired help to come into home she would scare them off weekly. But I need advice on how to try and stay sane. How can I get her to take pills and stop thinking I'm trying to control her. I know it's really that she's upset I control her pills and it's more the addiction than the stroke or bipolar but what if it isnt? I've read that stroke patients can be argumentation and combative, so how do I know the difference?
Anybody out there taking care of a parent or loved one who is an addict too? Or a loved one who has mental problems as weak as an illness or someone where there was a pre-existing dysfunctional relationship? Please I want to hear from you, I need to hear from you. I need to talk to someone, anyone to know that I'm not alone. To reassure me, I'm doing the right thing. To encourage me not to give up on her and walk away. Despite everything she is my mom and I love her although she doesn't make it easy. I don't want her to get any sicker or die. Do I beg her to take pills or just as I've done today, just not give them to her until she asks which could be never except for her "fun pills". I just don't know what to do and at wits end.
21 days ago
My mom has been diagnosed with vascular dementia. I had her going to senior care , where it was a group of 5 people that were fairly high functioning. My mom has begun to sleep most of the day and now the center has called and said she can no longer participate due to the fact she sleeps the entire time there, or says she is too tired to do any exercises and even will not take her lunch out of her bag to eat. I have noticed she is much more confused and the best way to explain it is, she has seemed to have lost her ability to reason, cannot process what you are saying to her, and if she can she cannot formulate an answer to a question. she has not forgotten the name of anyone, and can talk to you if she starts the conversation. I am at a loss, I have her full time and need to figure is there a program that she can go to during the day once a week, to give me a break and stimulate her. My concern is if she is just sleeping, the program would be a waste. The center she was attending felt another program may not benefit her
about 1 month ago
I'm new here, but need a new perspective. I am the caregiver for multiple people in my home. My 82 year old mom, who has multiple health issues, ie: failing eyesight & hearing, short term memory loss which is failing quickly plus fibromyalgia osteoarthritis etc; my husband (11 years older than me) who has stage 3 copd, had a massive heart attack 12 years ago(died on the table) & open heart surgery about 10 years ago; my 41 year old son who has Tourette Syndrome, ADHD, a sleep disorder, back trouble (3 surgeries since he was 19) & bladder problems from scarring to his nerve; my 39 year old daughter who has fibromyalgia, osteoarthritis (needs a knee replacement) chronic Lyme disease, heart damage from a strep infection, migraines,& is now soon facing her FOURTH neck surgery. She had 1/2 her thyroid out 11 years ago, the other 1/2 out a year later; 4 years ago she had a mass removed (a vein & salivary gland both nicked during surgery), & now a new mass is growing. Her 2 children also live with us; my grandson was born 11 1/2 years ago at 3.5 lbs, 9 weeks early. We just found out he's recovering from mono, his vitamin d is way down & his thyroid is off. His sister, 9 inherited hypertrophic cardiomyopathy (heart muscle grows, which can cause sudden death if not monitered), from her father & we have to watch out for her. The biggest problem is that, at almost 59, also have : fibromyalgia, osteoarthritis everywhere, my back has severe problems neck to tailbone, I get migraines, have thyroid issues, depression, I just got diagnosed with Lyme disease myself & there's much more. I am the one who now has to take care of all the housework (sometimes my daughter will do dishes, she does her own clothes), I fire our coal furnace, carry out ashes (this year the pipes came apart, our house filled with smoke & I had to put them together myself; my other son bought aluminum tape & I taped them; our blower motor went screwy & for multiple days/nights I was on watch for screeching & had to run to the basement & spray on grease; now it just clunks all the time), I do all the outside work except mowing, which my husband does with his riding mower. Last year our basement flooded from an exceptionally heavy rain; a local Christian group cleared out 50 years of excess ruined stuff, thank God!). My biggest problem, other than money, is my mother. When my daughter moved back in 4+ years ago she was pretty manic due to her as yet undiagnosed health issues, & my mom wasn't very nice to her. Because of that my granddaughter is very antagonistic to her. My mother is not easy to live with & her memory loss, combined with her increasing health issues, are really getting me down. I told my 5 siblings almost 3 years ago, after a major fall (frequent falls) that I wouldn't be able to handle things much longer. Unfortunately this past 6 months my 39 year old nephew died from pancreatic cancer, another sister developed strep in her knee, became septic & almost died, ending up here for over a month recovering, & 1 brother has been diagnosed with prostate cancer. The last 2 are the ones who live close. The others all live away; 1 other brother just an hour away, the other 2 very far. I am falling apart. I tried over a year ago to get my mother to accept outside help from the area agency on aging. She refused all help, afraid someone would insist on helping her shower. She spent 1 night 3 years ago after that 1 severe fall, in a rehab/assisted living facility where someone inadvertently injured her back even more. Now she's terrified of any facility. I don't know how to deal with this anymore. My depression is deepening & I resent my mother terribly. I know it's not her fault, but I was with her as we had to put her step mom in a facility after an adverse reaction to meds that she would have come out of, enabling her to stay at her home longer, but my mother couldn't handle the stress of being on call for her anymore. She is also much worse off than her aunt, who stepped in for her when her mom died) before she went to an assisted living facility. She won't look at the reality of how difficult she is, the stress I'm under with all these problems & how much it's effecting me. She's fallen multiple times in the last year, also fallen asleep & we couldn't waken her twice (in our doc's office once - she was taken to the hospital by ambulance) & gone via ambulance twice from home for falls. I have nobody to turn to for help. My daughter's been trying to help by organizing mom's meds (she screws them up all the time, even though they're in a medicine case), & finding the many things she loses daily. But surgery time will be coming soon, & I will have my daughter to take care of & her children to see to by myself. Finances are tough; my husband has only SS retirement, I receive 275 disability, my son is on ssi, my daughter gets very little child support & is waiting for a disability determination (her docs & a local social security rep agree she'll get it) & my mom's tiny 153 monthly pension & small social security retirement. I know that my mother is fighting her decline, I realize all that entials emotionally & mentally. Unfortunately that doesn't make things any easier on me, & I've about had it.
about 1 month ago
I'm a caregiver if an almost 40 year old daughter who has been getting worse she has developmental delayed issues as well as bipolar disorder . I've taken her to her psyschatrist and all she's been doing is changing her medicine every time we've gone the past 4 months.each time she gets worse than before . She is now not hardly eating and refusing to take her medicine unless I practically forse it into her . Any suggestions or a good psychiatrist near Brockton MA would be most helpful.
An anonymous caregiver said...
about 1 month ago
MIL has been with me for two years now .... and boy, have the years stretched. She came to us in pretty poor shape, but we've nursed her back to decent health (she's 85+) and she's going to one of her daughters in a month's time.
She's downright nasty, and goes out of her way to ensure everyone gets more than a healthy dose of that, every day. I've learnt, over time, to disengage myself, so that I can get through the day. Today, though, I'm at the end of my tether. The aide we have for her, has finally had enough, and wants to quit, because the nastiness is getting to her... and when confronted, MIL is acting like she's the victim here, and the world is against her. Am honestly fed up to my back teeth, especially since there's just about a month left for her to leave, and she seems determined to make it excruciatingly painful for everyone! I hope we're able to get someone to replace the aide, because my husband and I work full time, and I cannot afford to take time off from work, to have to deal with her.
about 1 month ago
So mom just came home from stroke rehab and I realize how unprepared we are. She can't walk hardly at all. She can't tell when she has to use the restroom and needs diapers changed a whole shopping bag of meds after one full day I've had 2 complete panic attacks. I am a fish out of water here and scared to death. I'm in PA can anyone recommend a good in home care service and what the cost is on average. We need help.
about 1 month ago
I'm in my 6th year of caring for my mother and I'm just wondering if anyone else ever feels like they just want to run away (anywhere). My mother is 96 and wants constant attention. I'm an introvert and constant attention for me would be my worst nightmare. I just came off of my company holiday (work from home full time) and feel more burnt out than before the holidays because I had to spend every waking minute with my mother. I am miserably unhappy and have gained about 70 pounds because I am so sad that I never get to do anything or go anywhere. I saw a therapist and he said, you are the adult now and she is the child. Well, easier said than done. I had just packed up all the Christmas decorations and had them in boxes to store (somewhere). She wanted them put away immediately because she doesn't like her house messed up. They were some boxes in the dining room neatly stacked. She is always nagging and demanding while thinking she never does. I have no one to call for a weekend break and she won't pay anyone to come give me a break. She just doesn't seem to care about anything other than her own needs. I am a baby boomer but I'm not set for life. She is going to give me her house if I stay with her which would certainly help me but I feel like it's being used to create a slave out of me. She makes me clean the house before the caregiver comes and when I was working one day, she told me to offer the caregiver some candy. She cares far more about the hired people than she does about me. I just don't even want to look at her right now but I have to go in and make her dinner. Just wondering if someone has had similar experiences. I feel she is like the Queen of England, plenty of people around her that could handle the monarchy but damned if the queen is going to give up that crown, no matter how old she is.
2 months ago
I've been a professional in home caregiver for years. My old company was great. I loved my bosses. Loved my clients. I was a 5 Star employee. I had more clients and their families at my recent wedding than I did my own family. I recently moved. Started with a new company. Besides the fact that I feel the bosses are just uncaring, every single client I have, even with subbing, their homes are nasty. By nasty I mean, you never know if the feces on the floor is dog or human. You can never use any of the restrooms because they are so disgusting. Days worth of feces and pee from everyone in the house because they don't want to flush. Sinks full of dishes and FOOD and cigarette butts. Know how most people empty out their scraps/leftovers off of their plate? Nope. They just stick the whole plate and pans and pots in the sink, full of wet nasty bread, chicken bones, wet paper towels, even cigarette butts. They do so because they know we will be coming to clean it. They smell so bad, I force myself not to gag whenever I first walk in. When I leave, I end up smelling of urine and feces all day. And everyone of them are either able to clean, or have an adult child or grandchild who could. But they don't, at all, because they see it as ''my job'. Then the dogs. I've been bitten 4x this past 6 months, all by little angry Chi's and pomerians and the clients just laugh, saying 'He's just protecting me!'
I'm just so overwhelmed. I'm not used to these types of clients. I wear gloves just to change sheets. Heck I wear gloves every second I'm in these homes. There's one home who's so infested with roaches, I can't even bring my work bag or jacket in, I'm afraid of carrying them home. Does anyone else deal with this? It's turned me into a super clean freak at home now. Bathrooms now disgust me. I clean mine EVERY. SINGLE. DAY. I have my 6 year old use a washcloth go clean out the sink every time he brushes his teeth. I mop and sweep and dust daily, sometimes 2x a day. I worry if there's any 'smell' in my home. I feel as if it's always on me. What would you do? How would you
Load More Conversations