What is the one thing that bothers you the most about caregiving?

What bothers me is my 96y/o father’s lingering and Medicaid stress . I am giving up my apartment at the end of July in New York because I cannot afford maintaining homes on two coasts. I had hoped my father would have died during this year, but that is not happening.

I feel very sad that I cannot continue going back and forth every other month but I cannot afford it and I am going to be 70 years old in October and want to prioritize my life. I am tired of living out of a suitcase and want to live a life where I live in California. It is not possible because I’m always off to NYC.

But I still have to say I still feel sad that I do not have the financial and emotional wherewithal to see this through until my father dies. If I knew it was happening this year I would have renewed the lease but seems this situation can go on indefinitely.

I will be relying on the kindness of my friends when make my shorter visits to see dad. I hope im able to make this work.

That even the "experts" and "experienced" are judgey. Especially in this forum. But also the same as you. This selfish woman that now has dementia x3, is so incredibly selfish, even more so than she was before. My mother recently spent 4 weeks complaining that her little fridge is empty, refusing to ask my siblings to help her with her little snacks, 9 - 18 messages a day, "oh your brother is so busy. Oh your sister is so busy. And she doesn't have a car(lies my sister told her)" but I'm raising two 16 year olds, a house I'm trying to repair and update, 2 jobs, but THEY are too busy. So I finally bread down and sneak away from work to take her some snacks and she didn't even know who I was. Literally had no clue. My name didn't even ring a bell. But she knows EXACTLY who to message when she wants attention. I too, could cut my arm off right in front of her, and all she would be concerned with is her fridge snacks and her aches and pains and how much she hates it at the AL.

My husband and I are both disabled, but I’m the one who takes care of him. He has dementia and he constantly makes annoying noises, though sometimes he can understand a lot and is often articulate. We do have a daytime caretaker, but my husband is the one who demands all of the attention. When he goes to the emergency room, he has learned to make a lot of annoying noise and bangs on the walls to get the medical staff’s attention and (sometimes) get priority treatment. The staff has gotten after him at times for disturbing other patients who are also in a lot of pain and needing help. Most of his spine except his cervical spine and 2 thoracic vertebrae is fused and has been gradually done over the years due to a birth defect. He did well with it until he was about 72, though the dementia started a bit earlier. I badly need a second surgery on my cervical spine and surgery on my lumbar spine. I have bad sciatica and polyneuropathy and myelopathy of my cervical spine again. My cervical spine is more serious. I have had to put this off for the past five years in order to take care of all of the financial issues, house repairs and paperwork that he didn’t keep up to date. I had a class 3 ankle sprain last summer which involved tearing three tendons and had to still keep going, then I started working with a spine clinic toward resolving my spine issues. I have had one issue after another that kept me from pursuing the care I so badly needed…major plumbing issues, was hit by an illegal immigrant’s car with major damage and no insurance on her part. She was deemed at fault and .lied about her insurance. At that point, I took a break in following up on my spine and had all of my routine testing done so I wouldn’t have to do it while recovering from surgery. I had complications of my endoscopy/colonoscopy which took a lot of additional testing and doctor’s visits. I then had cataract surgery and discovered that the gray/purple cloud that had been over my over my eye for sixth months was an ischemic stroke and I lost a lot of the vision in my right eye and am having trouble with the left. Because of this, I am having a lot of doctor’s appointments, lab tests, scans and MRIs which exacerbate the pain in my spine. I’m thinking that perhaps the stroke was caused by all of the stress brought on by taking care of my husband and putting his needs before mine. Meanwhile, he is watching TV, eating lots of junk food and laughing up a storm at comedy shows. He doesn’t seem to understand how very hard it is for me to attend to his needs when I am hurting so. I am 75 now and so overwhelmed. I am trying to keep my inner feelings calm and but it’s so hard. How much is too much? How do I take care of myself with all on the other things that are demanding my attention?

This is an April question, in case you didn't know.

A fear that I am alone in dealing with certain issues and physical or psychological or neurological issues that are beyond my ability to handle. I try to work as a team with medical professionals and yet in the in-home care scenario I am on my own to make the best possible decisions with no one else to consult or to tackle the problems. The worry, the overwhelming responsibilities and the feeling that I am alone sometimes really bothers me.

Agree

When your husband of 50 years thinks you're someone else, like an old gf, and you have to pretend it doesn't hurt your soul.

When everything is hard, but your mostly absent family thinks you're not doing enough and expect you to read and do everything they find that might help.

When the hard days start outnumbering the good, and you know it's not going to get better.

When you respond too harshly because you really need a break from it and know the guilt you feel now will be nothing compared to when he is gone.

When you imagine a future without the man you have loved since you were 16 yrs old.

When you feel guilty for wondering "What about me?" because your kids never ask, "How are you doing, mom?".

When you feel guilty (and judged) because you had no clue he was not brushing his teeth and only using Listerine to rinse them.

When things change every single day and you realize you have to monitor the simplest things.

When the man who always fixed everything is no longer able to and you learn more about riding lawn mowers than you ever wanted to know.

When you feel the weight of doing every little thing by yourself because it will be faster and less frustrating.

When he always used to drive, and now it's just you, and you feel an ocular migraine coming on.

When you feel stalked when you've left the room for 10 minutes and feel bad because you know he feels so lost.

Thank you for listening.

lack of appreciation. Not all deal with this, but with later mother I would have almost felt good to help her out with things, sort of a purpose in life

But when she was unappreciative and just told me how much more her friends and relatives kids do for them than I do, I thought WTF

Feeling guilty for wanting my life back when i know others are giving up more but knowingmom can'tsurvive without my help. Feeling helpless and overwhelmed and frustrated, not knowing who can help me find a way to finance care for my mom who needs and finally wants a move to assisted living.

Not a great answer, but I am just SICK and TIRED of the WHOLE THING.

I know first-hand the challenges and sacrifices that come with being a caregiver. I cared for my grandmother while also being a single parent to my young daughter, working, and attending nursing school full-time. It was physically, emotionally, and financially demanding.

I learned how important it is for caregivers to take time for themselves—every single day. Do something you love, even if it’s just for a few minutes. Also, find an activity you and your loved one enjoy together. For my grandmother and me, that was cooking; it brought her joy and kept us connected. For myself, daily walks cleared my mind and helped me recharge.

When my grandmother passed, I found comfort in knowing I had supported her fully, with love and dedication, until the very end. It’s not an easy journey, but it’s one filled with moments you will cherish forever.

How much effort, skill, and luck it will take to successfully build my life back after 10 years of primary caregiving ended. Other friends and relatives have gone on with their normal lives during that time.

It makes me realize that I gave too much and drove myself into the weeds. I have to keep trying, though: it’s my life.

I can relate! Just got diagnosed with breast cancer and the hospital calls while we’re running errands and she assumes it’s for her.

I get exactly what you are saying! But thats not what bothers me the most. Mine is that everything I say about them making their situation better on me, and themselves goes in one ear and out the other and they sometimes don’t even listen to me. I live 45 minutes away, and have my own home and husband, and it seems they would expect me to be the one to come back and live in their smelly (cats),hoarded house with no air conditioning, while I am the one doing it all there. It would be more helpful if they give up their home and move closer to me or live with us. They won’t budge, but yet I feel the heavy guilt of it all because I choose not to live with them and be at their beck and call 24/7. Why on earth do I have to have this awful, heavy guilt that’s making me physically ill!? 🤦🏻‍♀️😖

Falls

Easy to say "it's the disease talking or acting out." Lord knows I'm guilty of this. But, dagnabbit, there are days when dementia is its own beastly self, I hate it.

Just wanting this to finally be over already. I'm pleading with God for this to be over already. I'm sick of watching my father linger. He's a step up from being a vegetable and yet he just lives on.

Mine is being the only caregiver and living with her and also just losing myself and the life I had.

I get that completely. What gets to me most is how thankless it feels sometimes — like all the effort, sacrifice, and sleepless nights don’t even register. Some days it makes me feel invisible too. Then the guilt kicks in for even thinking that way

same Here. I cook, clean, take care of her full time. Clean her messes, handle her meds. She is incapable to do anything on her own She never appreciates anything . It’s all about her. I could drop dead and she’d worry where her snacks were and she’s mean!!! She won’t answer when I try to talk to her . She’s moody as hell . I know she’s sick so I try to overlook it but I’m so abused I just can’t

My biggest issue with caring for my mom is not being able to leave my house. I am 71, a widow and have always been very active. I lost my husband seven years ago and as he was dying of cancer he told me to please keep living. I have been trying to do that. As of two months ago, I stopped because I cannot leave home with Mom alone.

My passion is still riding my motorcycles. Up until about two months ago, I was doing that almost daily, all year round. I have ridden for 55 years (my husband also rode) and it was my life. I have one sibling who moved several thousand miles away. I am thankful when she or my niece comes down for a few days to watch my mom so I can go away on my bikes with my friends. It is my only peace. I keep trying to remind my family that I don't know how much longer I will be able to ride, which is pretty much all I want to do. There isn't much else that gives me pleasure.

I had a TBI thanks to a drunk driver who hit me when I was on duty, many years ago which greatly effected my ability to read and retain anything so it has been difficult to do sedentary activities. I can't even sit long enough to stay focused through a movie. I can't paint, draw or do any woodcarving because my mom lives with me and I just can't even focus on any of those things for a short while because my mom distracts me everytime I try. I feel like I have been kidnapped in my own house. I am frustrated and depressed. My friends have stopped calling me to go riding because I have to tell them no. I hate being at home all day! I grew up going to the beach which is only three miles from my house and was riding there everyday that it wasn't raining. It is also my favorite place to talk to my best friend-husband, my hero my Dad and others I have lost. I also pray so much easier there and my broken mind does so much better there. I miss seeing my local friends there and fellow riders of all ages.

My husband helped my through much of my post TBI life and I struggle to take care of my own things AND my mom's. I stress about it constantly. It takes me likely ten times longer to take care of my bills, paperwork, etc. I was in cognitive retraining, OT and speech therapy for two years following the drunk driver hitting me. I couldn't go back to working as a police officer. So I have had about all they can do for me.

I have had hospice for Mom for a month. They are wonderful but the volunteers why can come to watch her can only do so for a few hours and not very often. I greatly appreciate the shower lady who comes as that is a difficult task for me,

I have a standing appointment to see a specialist who doing some brain/eye rehab (a result of the DUI) and it is about an hour and a half away, every week that I have had to cancel twice. I've been going for two months

I'm trying not to be bitter and resentful but I'm going downhill fast with depression and am trying so hard to find a solution to get my life back. (My PTSD from my career, becomes exacerbated with stress). I just want to ride everyday again. That's my life, peace (I can't and won't think of anything else when I ride, only being safe). My Indian motorcycle group is my family. They are mature thinking safe riders and are mostly couples with a few singles and younger riders too. It was my only social life as well. I'm not ready give up my life to babysit my mom as my riding days pass by so quickly.

My mom is 94, healthy except for her dementia. She isn't angry but her memory is the biggest problem and I am beyond frustrated. She doesn't have long term care but her money wouldn't last long if I had to put her somewhere. I hate that she has to live like this. She has always been a good person to everyone. It's sad and frustrating. My head trauma has obviously made my life more challenging.

Thank you for letting me vent. I see that many of us are in the same frustratingly rocky boat.

Lack of good sleep. He’s up several times during the night.

I will be going back to NYC next week to visit my father and have a knot in my stomach.

I gave up my lease to my apartment in NYC in July. I was staying for month long stretches visiting him at his NH. I felt guilty I had to do this but I can no longer afford to have two residences.

I will be going back next week relying on the kindness of my friends to put me up for one week. I have been home for over a month now which has been so relaxing and nice. It has been a very long time that I haven't felt like I was living out of a suitcase.

Not looking forward to going back watching him sleep and drool and filling up the time with inane chitchat only to have him stare blankly back at me. I am hoping he finally won't recognize me on this visit and I can feel some justification in not going anymore. I just want this to end.

My sister moved into my house on an emergency basis when she was thrown out of assisted living. I thought she would be here short term because we’re trying to get her into another assisted living situation. So for 2 months I considered her a guest. Just before the commencement of the third month, I told her I wanted to be paid for room and board and light care. Someone must be available 24/7, but otherwise she only needs meds administered, scheduling, transportation and accompaniment to medical appointments. The thing is when I asked for payment, she acted like I was stealing from her so I delayed another month, but I still want paid for that, and this is unsustainable, going forward.

Sounds like there was an issue already at play before the caregiving.

There are 2 things that bother me most. First, is that I can get paid by the state to care for two family members. I retired 10 years ago. If it was money that I needed, I would have continued to work. I loved my career. I retired so that I could travel, read and relax. I want my life back.
The second thing is that they don't recognize my level of stress because of my physical appearance. I look great at 73yrs.
I have always taken care of myself. I have fallen off my horse and can't resaddle. My balloon has a major leak. Caregiving is physically, mentally, spiritually and financially draining experience in my life. I tire of people telling me I can handle it because I look great.

I'm a volunteer caregiver. I would sit in on nights when my brother has to work. What gets me is the stubbornness of my mother and unscary risks. Not using her walker or elevating her feet for the swelling go down. I am on a fixed income, and a caregiver is expensive. Even though I volunteered to watch mom on the few nights and not really obligated for those nights, I feel obligated to not leaving her alone. Today, she was just discharged from the hospital from a fall this morning. Even though a loner, I do miss my retirement at home.

I find that some folk suggest that single and widowed people 'might like' to take on the full time care of an elder, not even necessarily a relative, as if to suggest that our lives aren't really as important, or as busy! It has happened to me more than once, but thankfully this site has helped me navigate this issue. I do offer assistance to some of the senior folk around me and in the family, but it's the assumptions and spoken expectations that sting!

So many things ruminate in my mind. Right now it’s how all this care is going to be paid for. 2 parents with tremendous care costs and funds will run out in 2 years. I’ve consulted financial advisors and Medicaid lawyer. I wish I won the lottery. Ha ha.

Caregiving was my occupation and I loved my patients as a whole. The downside? Their family members who seem to think that I could wave a magic wand and make their mom or dad's dementia go away. The family members who were fully aware that that when I go home they have to pick up the slack and caring for their beloved mom with dementia. The "please make my mom better" comments were unreal and they were not open to learning about how dementia progresses. All the while I'm doing this my own mom has dementia and lives in another state.

That everything is all about her. Just like you said. And that all the people who have not made one single effort to go visit my mother in AL believe her when she tells them her kids don't even visit her. I could have been there 2 minutes ago, and my mother would think I hadn't been there for months. That she lies, constantly. No, I don't mean confabulates. I mean she lies. Any story she can tell and make her self the victim in it, she will tell it.