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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.

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Chloe2U said...

4 days ago

I am a professional caregiver and take my career very seriously --I always try to go above and beyond what is expected of me and most of my clients request me over and over again. I am currently on a long term round the clock assignment 5 days a week from 3pm-11pm. My problem is with (a) my scheduling supervisor and (b) the caregiver who works the 7am-3pm shift. I recently contacted my scheduling supervisor because the a.m. caregiver was doing no housework, the client sometimes looked disheveled when I arrived and was not always being properly supervised. Breakfast dishes would be in the sink/on countertops, laundry piled up, his bed is never made and trash cans were overflowing. The a.m. caregiver is always parked on the sofa watching tv when I arrive. My supervisor talked to the other caregiver and things slightly improved for a day or two. I delivered a handwritten letter to my scheduler telling her in detail of the dates and sub-par work that was being provided by the other caregiver. My scheduler immediately drove to my assignment and cornered me in the client's kitchen where she began telling me that she had never had a problem with the other employee until I began working for this client and she was beginning to think that I was the problem! She said it's my job to confront the other caregiver about her housekeeping / client care skills. I told her that it is her job to speak with her employee and that I'm not comfortable confronting a co-worker in a client's home. The scheduler/supervisor then spoke to 3 family members (I stepped outside after the first few minutes so that my client could feel comfortable about any comments). The client & family confirmed my concerns about the other caregiver and I said nothing to my supervisor when she left the client's home. My scheduler/supervisor called me several minutes later to say that she had made a mistake in accusing me of being the problem and that she feels the company could benefit by having me as a mentor/trainer for new hires. Later in the shift a family member confided in me that they told the scheduler/supervisor that the 3-11pm (me) caregiver is a "10 star employee" and that if I was reprimanded or let go then they would cancel their service. I guess my point is that I feel I am right in declining to speak with a co-worker who is so neglectful in her job duties and I should have no role in disciplining or speaking ("confronting her" was the term used) to my co-worker. That should be something the agency handles. I don't like confrontation --how am I to know how this caregiver might respond?!? I really don't want my client or their family upset by any discussion that might arise between caregivers -it's unethical in my opinion. Also, I'm not being nit-picky about the housework as several family members have complained within the home, but were afraid to speak up when previously asked about their satisfaction, etc. because they didn't want anyone to be fired. Wow...! I have had issues with this scheduler/supervisor in the past and really want to leave this agency because my interaction with her has mostly been very negative and never encouraging -with the exception of her apology phone call. I'm just discouraged and feeling badly about doing what I thought was the best way to handle the situation.

2 days ago

Chloe2U said...

1 day ago

VivienneP said...

7 days ago

I am caring for my 83 year-old mother-in-law and have two children who are 10 and 11. My MIL has almost no short-term memory but is able to get around (with a steadying hand) and handle her own hygiene (with reminders). My husband and his two siblings decided against assisted living because she was so against it and because of the cost. She will eventually need nursing care but they are trying to avoid it as long as possible, it makes sense. They split the year up into four month "shifts" where she lives with each of them.

I am a stay-at-home mom and work from home, so I am with her all day - breakfast, lunch and dinner. I prepare all her meals and see to her meds. She's happy to read and watch TV, but it is a strain. By the time my husband gets home from work and we have dinner, I'm ready for some space. He takes over by watching TV with her and comes to bed long after I've fallen asleep. I feel like we are dividing and conquering for the sake of practicality, but we are living separate lives. There is no joy in our marriage.

My husband and his siblings all work and a lot of the care of the mother falls on their spouses, yet we (or maybe just I - I shouldn't speak for anyone else) don't have a say in what happens. I am not compensated for my work nor am I consulted when making future plans. I realize that money saved on her care will benefit all of us, but still, this is a lot of sacrifice. I am glad that there are three of them to spread her time between (we take four months at a time) and our "shift" will be up soon, but I really worry about the health of my marriage and family.

emptynest said...

7 days ago

Sheila1944 said...

7 days ago

dee4huskers said...

8 days ago

Its been a year since I posted but I am Caregiver to my 82 year old mother and 61 year old sister who is about 3 years older than me. I also have POV over my mother's health and finances. I am on disability myself, married and my husband assists me. I was able to take my mom and sister to the grocery store, dr appts after my stepdad's passing in 2013 but it became really draining on me mentally and physically. Earlier this spring I was calling my mom's md and was practically begging for help. My mom's dr said she has early onset of dementia, she also has afib, asthma, diabetes, and has a horrible habit of picking sores, or her nose which leads to nose bleeds for hours. My mom and sister lived together and I had to call an ambulance from my house because they didn't know what to do. Then my mother had a fall, broke many small bones in her pelvis, had a procedure to glue the bones together and luckily I was able to place my mother in a wonderful assisted living facility about 7 minutes from my home. Then there is my developmentally disabled sister - I thought she could still live in the house but I found out she was going door-to-door of the neighbors for someone to talk to. I believed my sister to have a mentality of around a 12 year old and I am completely wrong. She has the mentality of an 8 year old and is much more needier than I thought. So my mom is settled in the assisted living but calls me to complain about the food and she has a bad cold. I tell my mom to tell the CNAs or push the pendant on her neck. It is so strange because my mom never told me before when she had a cold at home but now when she has people who make sure she eats every meal, gives her medicine 3 times a day and she takes part in activities she is constantly calling. And my sister is like I'm taking care of another child but this child when never change and will never grow up. I am resentful and am angry at my mom because she never had my sister evaluated. My husband and I have a 35 yr old son who is now married and we have a daughter who is 24 and is living with her fiance and my 3 yr old grandson. My kids are gone and out of the house. I really resent this. I also have two other siblings that have not talked to my mom or sister in over a year. They don't care but they will when she passes away. And my mother was not a good mother to any of us. Three of us moved out of the house at 17/18 years old. My mother was married 4 times, she would tell us that we're dirty no good for nothing brats etc and beat us with a belt etc. But I still help her. This is not what I thought my husband and I would be doing at this time in our lives. I know my mother may not live another year but my sister has been deprived of a life because she was my mothers' gopher, housekeeper, companion when my stepdad worked. And the amazing thing is that my sister was able to work several jobs until they were phased out and she saved every penny. She has a savings account in six figures but on the other hand she does not understand how much money she has. She also inherited money from my father as I have. But my sister has said in not so many words from talking with my mother, that my husband and I are supposed to take care of her. My head almost exploded. I can't dump my sister off somewhere but everyday is so frustrating. At this point, I take my sister to see my mom at her apartment at the assisted living almost every day. Sorry for the rant but I am so frustrated and tell myself daily to be patient. :-(

dee4huskers said...

7 days ago

Sheila1944 said...

7 days ago

Francis Henry said...

10 days ago

I have been in a loving partnership with a lady for over twenty years. We have had our ups and down, but over the past two years certain delusions and accusations by her have become common I am 74 and she is 77. Together with her we have helped bring up three loveable grandchildren and gone on holidays, etc. Remember, I am with her 24 hours a day and see aspects of her behaviour others do not. I am accused of taking money from her purse or somewhere and her bank account (demonstrably false), also having a mistress across the road, bearing in mind that I am never out of my partner's sight, and also selling her clothes and giving money to this woman who I do not even know. The constant emotional abuse and vile language and racial slurs is killing me. I am Jewish now Catholic, like her and am told 'all Jews are thieves and love only money, and the rest.she accused me of calling her while out walking the dog of saying 'I am sending a man to the house with a key and a knife.' Never happened. The other evening after a five hour harangue she started beating me physically about the head with the television remote and threatening to knife me, after a half bottle of vodka. I made the mistake of calling the police to intervene just to make it stop, and they took her to spend the night at her daughters house nearby. She called me that night and said 'you had better be gone when I get back and watch your back, Jew boy' I am am shamed to say I fled and am now with her sympathetic brother and his wife, both doctors. She also accuses me of doping her although I have only given her what is prescribed for her. In the past I have quite literally saved her son from a life of crime, as well as being part of a loving family for twenty years. Her daughter sees this as a relationship crisis, not some sort of mental one and my partner says she never wants to see me again. I am bereft and desolate with nothing to live for and I am almost certain she has frontal lobe onset dementia. I am lost and helpless, innocent and cruelly misjudged by a family who don't want their lives upset. I am totally lost. Any advice for the hopeless?

Francis Henry said...

7 days ago

Sheila1944 said...

7 days ago

OTL said...

14 days ago

I have been a caregiver for 9 years. I have no help from family or friends. I care fit a high functioning brain injured young adult , I cared for mr Dad in home hospice til he passed and now have my Mom too. My daughters coping mechanism to get through the day is to text me incessantly when she's upset. The Drs say to let her continue so she doesn't get hysterical and can stay emotionally stable. My mom has beginning dementia and is a narcissist on top of that. She is spending her money continuously on junk or buys something expensive, doesn't like it, and gives it to me with a Merry Christmas. Then buys a similar item site unseen that she will also probably hate. This is a pattern and sulks when I try to tak to her like she's 5. I'm losing it.

emptynest said...

14 days ago

Sheila1944 said...

14 days ago

lorishandy said...

22 days ago

I am a caregiver to my moms 92 year old boyfriend she passed away 5 years ago and I promised her I would take care of him. Its been rough the last 6 months his dementia has gotten bad they were together 35 years my mom was 18 years younger than him. Its been really rough trying to work full time and take care of him and all his memory problems thank god I have visiting angels helping as my job is second shift but its very tiring all my husbands and i are decisions revolve and involve my sisers live 500 miles away so its only us I feel I need to talk to someone in similar situation ??????

Stumper said...

9 days ago

lorishandy said...

8 days ago

RebeccaJo said...

23 days ago

Hi everyone. I'm new to support groups but I think it's definitely time for me to join one. Fair warning, this will probably be a long first post... I apologize.

I'm in a unique situation where I am the primary caregiver for my 82 year old maternal grandparents. I've been trying to find books for caregiver for grandparents but there don't seem to be any. Here's a little background for you...

My grandparents have always been in good health and very independent up until this summer. My grandmother was on the cusp of showing some signs of memory loss, but nothing serious. She has had problems with arthritis in her shoulders for the past several years, but that's about it. My grandfather has always been healthy, except for some asthma. This all changed at the end of May this year. My grandfather had cellulitis in his right big toes and unfortunately had to have it removed, he had his right "index" toe removed last year with no complications. This time, he developed a serious infection in the amputation site and had to have a BK amputation. He developed even more serious infections, including MRSA, in the site this time and was sent to a level 1 trauma hospital where he was in isolation at the infectious disease department. During this time, he developed clotting issues, resulting in a diagnosis of CMML, a form of leukemia. Because of that severity of the infections, and the hematology issues resulting from the leukemia, my grandfather had to have an AK amputation. Meanwhile, my grandmother tore both of her rotator cuffs (with no possibility of surgery and enables her from driving and doing many ADL's), is getting more memory loss rapidly (dementia does run in her family, her doctors are aware), and is losing her hearing.

Thankfully, even though I'm only 28, I had the means to quit my job and move in with them to take care of them 24/7. We have spent the majority of time since the end of May in and out of the hospital with blood transfusions, accidents, bed sores, pneumonia, chemotherapy treatments, bloody urine and stool from bladder stones, and most recently a possible diagnosis of bladder cancer.

My mom (who is a huge supporter and advocate, don't get me wrong) was unable to take care of them, having had 3 neck surgeries herself. She would be unable to do the physical demands required. She works with elder care lawyers and helping families plan funerals and counsels them follow a loss. She comes to visit when she can but lives 1.5 hours away, she usually comes 1-2 times a week. She has been an indispensable asset to helping us. My uncle, her brother, is unable to help because he had a TBI years ago, leaving him partially disabled. I have 2 sisters, one who lives 2.5 hours away and one who lives 8 hours away. My fiancee did move into my grandparents house with me, but works on the road 5-7 days a week.

So it's just me. 24/7. And it has come to the point where I literally don't have anyone to ask for help or a break. My grandparents friends are able to visit with them, but I can't really rely on them for the physical demands or wound care. I have no friends out here and our lives are consumed with doctor's visits almost daily, physical therapists coming over, or home health nurses taking blood samples. I think I am holding up relatively well, considering I've been here since June but I know I need an emotional outlet. I'm becoming increasingly aggravated and short-tempered, losing sleep, and becoming lethargic... all classic signs of burn out.

Any recommendations, prayers, insights, or just even useless mutual chatter/venting would be gladly welcomed.

No-recess said...

23 days ago

EMora said...

23 days ago

This is my first time posting. I really need some advice and for everyone to understand I'll start from the beginning ( not long ago). About 6 months ago I was no longer employed was in a shelter with my daughter. I had done a little care giving for family. Basic stuff like rides and grocery shopping, cooking, cleaning.. I was approached by my case manager who said she was told of a woman who was looking for a live-in caregiver. I met the woman and her aunt. I felt bad for the elderly lady who had dementia, just gotten out from the hospital because she was removed from her home from neglect and family members taking advantage of her. I agree to do it. I wanted to help and partially knew I had to because my time was running out at the shelter and it was just for a short time to get her finances worked out and IHSS services set up ( it didn't). I was told that I was just gonna give her medicine, clean, cook and make sure she didn't wander off the property. I would be off from Friday afternoon to Sunday afternoon, 48 hrs. I later asked to have Wednesday so I can go to doctors appointments etc. There was some one to cover me but that person was always changing. It was OK because I had my time off. Periodically my calls were ignored if my relief didn't show up, until I sent text msgs. The niece (who hired me) has now got her mom to be here, who expects me to clean up after her, brought in roaches and dogs who defecate in the house on furniture in the yard, so I can have time off.which is now only Sunday morning so I can go to church, when its about 3 pm I get a call asking when will I be back. I have talked to her straight and said things jokingly but nothing changes. I am being asked to have the lady sign documents, take her to appointments and be around as a witness to conversations, hold onto checks paid to exterminator. I am constantly throwing away rotting food brought by her mother and piles of junk she stores on the side of the house.I'm going crazy... I have diabetes and now doctor tells me no heavy lifting. But I am constantly cleaning and working,even on my time off I'm expected to give her medication and keep up with her refills. at night I'm being called I have to lock my door because my stuff gets taken or I get I get walked in on. The last part is not so bad because the lady has dementia. Its something I know happens. But all this,extra stuff is so not what I agreed to. I'm afraid to just say no I won't do it because I have nowhere else to go and I feel like a jerk after hearing the niece talk about her health problems and nobody else to help.

Sheila1944 said...

23 days ago

Intheshadows said...

23 days ago

RebeccaJo said...

24 days ago

Hi everyone. I'm new to support groups but I think it's definitely time for me to join one. Fair warning, this will probably be a long first post... I apologize.

I'm in a unique situation where I am the primary caregiver for my 82 year old maternal grandparents. I've been trying to find books for caregiver for grandparents but there don't seem to be any. Here's a little background for you...

My grandparents have always been in good health and very independent up until this summer. My grandmother was on the cusp of showing some signs of memory loss, but nothing serious. She has had problems with arthritis in her shoulders for the past several years, but that's about it. My grandfather has always been healthy, except for some asthma. This all changed at the end of May this year. My grandfather had cellulitis in his right big toes and unfortunately had to have it removed, he had his right "index" toe removed last year with no complications. This time, he developed a serious infection in the amputation site and had to have a BK amputation. He developed even more serious infections, including MRSA, in the site this time and was sent to a level 1 trauma hospital where he was in isolation at the infectious disease department. During this time, he developed clotting issues, resulting in a diagnosis of CMML, a form of leukemia. Because of that severity of the infections, and the hematology issues resulting from the leukemia, my grandfather had to have an AK amputation. Meanwhile, my grandmother tore both of her rotator cuffs (with no possibility of surgery and enables her from driving and doing many ADL's), is getting more memory loss rapidly (dementia does run in her family, her doctors are aware), and is losing her hearing.

Thankfully, even though I'm only 28, I had the means to quit my job and move in with them to take care of them 24/7. We have spent the majority of time since the end of May in and out of the hospital with blood transfusions, accidents, bed sores, pneumonia, chemotherapy treatments, bloody urine and stool from bladder stones, and most recently a possible diagnosis of bladder cancer.

My mom (who is a huge supporter and advocate, don't get me wrong) was unable to take care of them, having had 3 neck surgeries herself. She would be unable to do the physical demands required. She works with elder care lawyers and helping families plan funerals and counsels them follow a loss. She comes to visit when she can but lives 1.5 hours away, she usually comes 1-2 times a week. She has been an indispensable asset to helping us. My uncle, her brother, is unable to help because he had a TBI years ago, leaving him partially disabled. I have 2 sisters, one who lives 2.5 hours away and one who lives 8 hours away. My fiancee did move into my grandparents house with me, but works on the road 5-7 days a week.

So it's just me. 24/7. And it has come to the point where I literally don't have anyone to ask for help or a break. My grandparents friends are able to visit with them, but I can't really rely on them for the physical demands or wound care. I have no friends out here and our lives are consumed with doctor's visits almost daily, physical therapists coming over, or home health nurses taking blood samples. I think I am holding up relatively well, considering I've been here since June but I know I need an emotional outlet. I'm becoming increasingly aggravated and short-tempered, losing sleep, and becoming lethargic... all classic signs of burn out.

Any recommendations, prayers, insights, or just even useless mutual chatter/venting would be gladly welcomed.

RebeccaJo said...

23 days ago

Sheila1944 said...

22 days ago

elaineSC said...

28 days ago

Has anybody ever heard of a paid private caregiver that told a doctor that the patient should not go to the rehab facility because it was against the wishes of the family, when in fact, we had already discussed it with the doctor at the hospital and a case worker since my Mom had an eye removed and bladder infection, talking out of her head, etc. but hospital wanted to release them? The caregiver came by to visit my Mom in the hospital and did this when my sister walked outside for a break. The doctor said he had seen this before and the caregiver didn't want to lose work, so she was willing to risk my Mom's health when she only stayed during the daytime. My elderly Dad was with Mom at night before her surgery. She needed the rehab badly. I was appalled and the caregiver was saying " I love you". I'm sorry to me. She always did this when she did things that were to her own advantage and not for the good of my mother. She was a CNA too. I told her the job was over! I was on to her. I've learned that the CNA designation does not mean that much except that they can take blood pressure and various things that family members can actually do but they have had a few weeks training. My sister and I were having to trek back & forth because if Mom, who also had mild to moderate dementia, would start fussing or crying, the caregiver called us to come there and when we did, the caregiver started talking about her personal problems to us and I was just standing there looking at her. This happened with 2 different caregivers. Maybe they were bored & just wanted somebody to come there. My Mom was bedridden by the way with rheumatoid arthritis. It turned out the caregiver was more of a challenge than my mother. Also wanted advance pay many times. Again, this was a common theme among self-employed caregivers. There is a need for caregivers/CNA's but be sure to watch out for these types. She also employed others but I realized she was not doing background checks and I Googled names & 2 had been in jail. Don't let this happen to you. My sister & I were new to this and trusted her because she had a manual with her "business name" and had workers compensation insurance, etc. so it appeared okay to me. My Mom ended up in the nursing facility fulltime and my Dad passed away a few months ago. I wrote this to alert others to please watch out for these types of people. They just can't get jobs elsewhere or don't want to work supervised in a nursing home or hospital. Beware! I salute the compassionate caregivers who truly have the best interest of the patient though. I don't want to put them all in the same basket.

Intheshadows said...

28 days ago

Sheila1944 said...

27 days ago

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