Caregivers and Stress

[TruTexan]

Well the bickering and bitching and nagging from my mom seems to be quieted down after her blowup earlier last month. My younger sister stepped in over the phone and backed me up. Mom is now having Medicaid take her to her appointments with her doctors.....we'll see how long this lasts.
And, she's got an attitude towards me that just makes me feel like she doesn't care about me honestly. She doesn't want me to help her, so I"ve told her just to call me if she needs anything but she's being stubborn and tells me she won't call me. I am just stepping back, letting her do her thing, and go from there. We'll see how things go soon.


Take care everyone and I hope things are better for your mom, Kelt.

[SelfMadeMan]

My wife and I are licensed providers, and have had the same woman with us in our home, for 9 years. Her diagnosis is frontal temporal dementia. In the time we have had her, she has gone from walking independently, and helping feed herself to being in a hospital bed full time requiring full care, and no longer "tuned in". She has been non communicative since she came to live with us, but she used to smile and make eye contact and interact a little. It's been sad to watch her withdraw further and further over the years, and the work has gotten more and more stressful as well. It's also been rewarding, and I know we've taken wonderful care of her. We have also gotten close to her husband and now grown children. We're retiring from this work as of August 1, and she will be moved to her next home or facility, and I've struggled with the very different emotions of relief and guilt. I didn't expect the guilty feelings I guess, but the family loves her being with us. Now that our kids are all grown and out of the nest - we want to have an easier, simpler life. So in August we're moving into our beloved motor home full time, and will be living on the Gulf of Mexico! It's a dream we've had for over 10 years and it's so crazy that it's actually happening. I'm not sure I'll know what to do with myself after all of these years being responsible for another human being 24/7!

[Kelt]

I just saw a video that is so exactly like what it's like to deal with my mother it both cracked me up and made me want to cry a little bit.

Dotty sends a text < It's vimeo so I can't imbed it, but it's worth a watch. Apparently it's winning all kinds of awards, so it's hitting a nerve with folks. It's really quite sweet.

It's also why after about three days of this I want to strangle her just a bit. It's not her fault, but it's maddening if you aren't there yet yourself. Then of course when I go home I want to strangle myself for not having quite enough patience...

[MsTinkerbelly]

Originally Posted by Kelt

I just saw a video that is so exactly like what it's like to deal with my mother it both cracked me up and made me want to cry a little bit.

Dotty sends a text < It's vimeo so I can't imbed it, but it's worth a watch. Apparently it's winning all kinds of awards, so it's hitting a nerve with folks. It's really quite sweet.

It's also why after about three days of this I want to strangle her just a bit. It's not her fault, but it's maddening if you aren't there yet yourself. Then of course when I go home I want to strangle myself for not having quite enough patience...

I have taken care of MANY people with varying degrees of memory loss/dementia/alzheimers, but i have never experienced it in my own family. I have watched the effect of these diseases on the families of my residents, and i have seen the tears of frustration and loss on heir faces.

I don't have any magic words that will fix things, or bring back that person who used to take care of you...but you have my prayers for strength and patience while you deal with this tragic situation.

[EmJay]

I don't like the term "caregiver" when it comes to me and my dad. So I prefer to just say were hanging out. We've been hanging out for 4.5 years now. He has ALS and for the last 2-3 years he's been fully paralyzed and requires 24/7 "hangouts." I spend days with him while my moms at work and she spends nights. It's never a guarantee when my mom will be home as she is a manager of a bank so some nights she doesn't get home till late. His breathing isn't great or even really good so we always make sure 1 of us is with him, it's too scary to leave someone else who doesn't know the breathing/eating routines he has. All of this kinda makes it so I am not really capable of being in a relationship. Most plans I make get cancelled because I am needed here when my mom may work late or simply because I'm exhausted at the end of the day. I don't have a whole lot to offer anyone because he is my number 1 priority and will be for the rest of his life. And when I think of dating later I can't help but think I will be so broken when he's gone that I will be so much more than a hot mess. Similar to dead inside maybe? My thoughts right now are.. If I'm lonely right now... What is it going to be like when he's gone. That scares me.

[Tommi]

Late stage Alzheimer's has taken her memory.

Now, it is taking her smile, her legs, her light is dimming. Her life is day to day.
My wife watches as her mother sleeps, expecting to see her chest rise and fall for the last time, her breathing stop, as she slips away in her sleep.

The last year has been a quiet decline for both her parents, after caring for them at home for 10 years. Her Dad is hanging on, loving his wife of 62 years, as they toddle to bed together every night.

It is life ebbing away, and taking it's toll on my love. Finally, two of her six siblings are offering her support. all out of state, Saying they will help. They will help find a place for them.

Will they step up to the plate, after 10 years, as their parents must move on and all want them to be together. Can we fly them from California to Michigan, both on oxygen, and relocate these febrile folks where the big family says they will care for them, visit them, and know it won't be for long.

The hourglass is running out.

[Kelt]

I'd think that 3 months after my father died and a month after moving my mother things would be getting easier. A couple of days ago I got a packet from the attorneys, I have four tax returns to do. One joint for when father was alive, one individual for my mother, one for the estate, and one for the trust. Then of course I have to do my own which is every kind of messed up from a cross country move in 2014 (CA thinks I still live there?) and three "event" changes in health insurance over the last year. Sure I'd be happy to do full asset and inventories from the date of death which I didn't do at the time because I didn't know it was needed (What? I've never been an executor before!) and all the companies I need to get info from have to use third parties to get access to their own information on an "as of" date.

Which means power of attorney.

I got a corporate POA a couple of months ago to take care of mothers pensions and medical needs. Of course they spelled my name wrong and that took a month to fix. Now I have a full POA for everything and have been sending that out since most places have a legal departments that take 6-8 weeks to process. Naturally, I didn't notice that this POA also has a spelling problem in that it adds a middle initial, one that's not mine. I missed it and only found out when the first brokerage called me to tell me my information request was denied from the mismatch. Seriously? Spelling errors are costing me weeks/now months of lost work. It's only a 14 hour drive to fix this.

But that's okay, I only sent out 12 of them.

[Kelt]

I just got an email from one of the people I have working at my folks house. The estate sale begins tomorrow morning. I don't have any attachment to the house, I'd only seen it twice before my father's stroke. They only had it 8 years.

But, the stuff inside, I really didn't go through it much, what would I keep? Furniture? Full up. Art? Most of it paintings done by my grandmother who died when I was 4, her life in Hawaii, I only remember (vaguely) one visit even though I gather she travelled with us quite a bit. Knick knacks from the global travels I wasn't a part of, cool stuff, but not my memories.

Most of the things from my childhood were the regular things, the good china and silver from holidays, they were posh at the time but nowadays so many people in their 80's are dying and there isn't much value to them on the market and nobody entertains like that anymore. Certainly not me, and my folks hadn't used those things for 30 years or more. It's just a little weird to know all those things won't be somewhere in a cupboard anymore. If it's this strange having only the early part of my life erased in a distant sale, how weird is it going to be for my mom?

It's 60 years of her life and maybe all of her memories. She's having a hard time remembering much without the visual queues around her. She has some things, it was hard to convince her to take anything, in the midst of her grief. She got so mixed up when it was time to pack, I gave her two weeks, she kept sorting things for the sale (something I'd told her not to since others would) and not thinking about the things she would want for herself. In the end I had to figure out what one little old lady in a one bedroom apartment would need and pack it in two days. I feel badly that I couldn't let her have longer to cull through her life and pick through the small things. But she wouldn't, and now it's really too late.

I'm driving the 400 miles back over on the 9th for a week of meetings with guys in suits, signing off the papers to list the house for sale, and taking my mother up on Mount Rainier (where her parents met) for a day trip and spreading my fathers ashes. Illegally.

There is no family, my mother doesn't know anyone anywhere.

I feel like some kind of monster for doing this to her.

[JustLovelyJenn]

I think I found my tipping point today. My son is on new medication, that isn't really working at all. The whole summer has been a marathon of yelling, arguments, refusals, and meltdowns. I did my best to remove my daughter from it by sending her to camp, her grandmothers, her friends... as often as possible. That left me and my 11 year old son with autism to try and stumble through the summer. I still had things to do, obligations to fulfill, even though I wasn't at work. I walked out of stores when he wouldn't stop arguing, watched him closely to catch when he was trying to shoplift, and tried to juggle him in one hand and the rest of the world in the other.

He's decided he hates me when he's mad. He tried to run away this summer. He slams his head against the floor, or a wall, or a book and tells me he hopes it makes him go away. I tell him I love him, but his behaviors worry me. I hug him and cuddle him whenever I can, but still try to be strict about the rules.

I just lost it today. Today the curtain rod was torn off the wall. Just one more in the list. It was added to holes in the ceiling, broken door frames, damaged vacuums, stained couches and carpets... and I lost it. I called his father for support, suggestions, anything... and the response was... "well watch them closer, just take things away, I don't know what to tell you, I don't let them do that to my house."

I curled up and cried so hard for almost an hour on my bed. The boy was in the bathtub... and my daughter was trying to finish the chores I had been asking them to do all day on her own... finally. And I cried, and I'm still crying. I just can't do it all on my own. I'm tired of the people who are supposed to be my support telling me how I must be doing it wrong. I'm tired of not being given time for my own emotions, my own needs, my own anything.

I'm trying to do this on my own, I'm working full time, I'm going back to school to increase my earning potential... and my grandmother just died... I'm sorry I stayed in bed till 8 am... and the kids can't monitor themselves that long... but something has to give... I just don't know what to do anymore.

[TruTexan]

Last weekend over the holiday weekend, mom had an episode of pretty good swelling in both her ankles(not overly swollen but enough), the right one broke open on the skin with a tiny hole and started seeping clear fluid. I took her to the doctor Tuesday last week when the doctor opened her office after the holiday. Dr. said could be cardio or vascular issue, but she wasn't sure what the hell was causing it. So I asked if one of mom's 4 blood pressure meds she's taking could be causing her feet and ankles to swell and so she checked that and lowered one of them that could and has her taking it at night instead of day time. I then this week on Monday called my mom's vascular surgeon's nurse to talk to her about what happened and for her to talk to the doc to see what we should do or if he wanted to see her. The nurse called me back and said YES he wants to see her and he didn't know what happened to cause it and also wanted me to make an appointment to take her in to see her cardiologist as well. SO, I did. Taking mom to see vascular surgeon on Sept. 22 for checkup and to see her cardiologist on Sept. 28 for check up as well and to discuss what's happened. It hasn't happened again but that doesn't mean anything. Her feet and ankles swell everyday but something caused more swelling that usual and something caused the skin to tear open a tiny hole in her leg and leak fluid. So, I hope it's just from her medicine and maybe one of them will change it and that it's not a blockage somewhere in her leg (which she's already had 3 surgeries done on her artery for blockages) or a blockage around her heart(which they found one late last year where her 30 yr old heart bypass graff had collapsed and so they put a new stint in it. She's had 2 bypasses on her heart done 30yrs ago, I just hope it's not another one gone bad). I'm worried but I can't tell my mom that, she'll freak out. She knows I called her dr's about what happened and said she'd go in. Now my younger sis is worried too and is glad I'm taking her in to check about it.
Let's hope and pray for the best result. Thanks for listening.

[Vincent]

Originally Posted by lillith

***Trigger Warning - Topics of emotional abuse, violence, and healing are below***

I was my mom's wild child. I am her youngest and the only one she raised until a teenager (this part is an super long story). I came back home when I was 28 and my son was four years old. I had no intention of sticking around that long. Well, 12 years later, here I sit. I have been to sole caretaker of my mother for the last four years. I have a brother (12 years older) and a sister (seven years older). Neither of which could take the time to come over and hang out with my mom, so I could take care of me. Neither of them seemed to care about what was happening with my mom. I would contact my brother, who only lives three miles from us, every time we ended up in the hospital. The response I often encountered was that it was my fault because I wasn't taking good enough care of her. He would yell at me and tear me apart. I endured this because he was her son, and I didn't want him to leave her, too. My sister left us ten years ago because of me, or so my mom says.

It seems that a lot of it is my fault, but I have done everything I could do that she would allow me to do. I tried to get her in home physical therapy, which she would kick out the physical therapist and never do any of the exercises. I tried to get a nurse to come over and be with her, so I could go just have a minute to breath. She would kick the nurse out, too, and I often found myself walking the people downstairs and apologizing profusely. She would yell at me that I don't need any time for me because she didn't take the time when she was raising me. I can only understand the frustration and fear my mom felt in marginal ways, but I tried to connect with her. I tried to make things better for her.

She has been in and out of nursing homes and the hospital, but this last jaunt into the hospital and the nursing home broke me. She has a history of leaving without doctor's consent, so when she called me two weeks ago to come and get her, I told her no. It broke my heart, and I sit here and cry now because of what has resulted from that one two lettered word. It was then that everything of the last fours years, honestly my whole life, came tumbling down out of my head and heart into my mouth. It was in those few minutes that everything I could never voice because I couldn't ever admit to myself was true. She threatened me through intimidation, "You better come get me." I still said no. She threatened me through guilt, "If you don't come get me, I'll call your brother!" I told her to go ahead and do that. Then she started to cry, "You don't love me." I said that I did and that is why I am saying no because I cannot take care of her the way she needs and that was me showing her that I loved her. She got angry again and told me that she was moving out. I said that is fine and that all of her things will be packed before she could get here. She hung up on me. I think I started to grieve then. I think in those quick moments I realized I just lost my mom because I figured it all out. I was the adult child of an emotional abuser, and I made the conscious choice to no longer be that child. I lost my will and desire to take care of her. I lost the guilt and shame of not being enough.

She called back later and tried to negotiate. She suggested that I move my son out of his room, so she could be in there. Before, she was in the living room. I laughed. I asked her who on earth asks their child to put them above his or her own child? She again got angry and hung up. It got to the point that I didn't want to answer my phone when she was calling. I felt like a horrible daughter and human being.

Two Fridays ago, I packed all of her things and she came with my brother and his wife to get them. It did not go well. My brother got violent with me and my son stepped in to defend me. My mom told me it was my fault that he put his hand on me.

It has been over a week since she has been gone. I have thoroughly cleaned the house, blessed it, but I still cry. I have missed worked and I keep looking for someone to tell me that I have been wrong in all of this because that is what my old tapes tell me I should be hearing. I wish I missed her. I feel bad for not feeling bad enough. I feel like a dick because I know that my life will better without all of the drama and heartache.

Lillith,I just wanted to say I had a similar situation sort of,my relationship with my mother was not good,ever,I wont go into it,but I ended all contact with my mother nearly 2 yrs ago,and it was the best thing Ive ever done,I chased a woman all my life who only ever hated me,I so badly wanted her to love me,I must be bad right,if my own mother hates me.?
But now it was the best decision I made,to look after me,I'm new here,but I think the threads here are so real,so thank you everyone for your honesty and openness.

[TruTexan]

OK enough for today of my mom. I wanted to strangle her today because she wasn't paying attention to the cardiologist telling her NO SODIUM OR SALT in her food anymore and Then after seeing him, I took her to a pretty darn good and local bbq place because she hadn't had any in a very long time. She was just griping about everything. OMG,That is when I was about to lose my cool. I had to walk out after eating and take myself out by the car and just light up a smoke. She stresses the hell out of me and I hate it, then I want to strangle myself because I can't seem to manage my stress level around her and she aggravates my ptsd so badly. I'm still tight and stressed and just got home, so I'm going to try and relax now because Tomorrow I have to take her BACK to the Cardiologist in the afternoon for an ECHO on her heart. He also took her off of 1 of her blood pressure medicines named amlodipene (sp?) because it can cause swelling and then wants to see her after the ECHO is done but 2 weeks later. I'm trying to be the good daughter and caring daughter I was raised to be but it's taking it's toll on me to do it. She honestly grates my last nerve of the day at times. And THAT makes me so upset with her and myself. OK that's enough of my ranting. sorry.

[Kelt]

Costs for Dementia Care Far Exceeding Other Diseases, Study Finds

This. Just hired two assistants for mother this week, fortunately she doesn't need much right now. The writing is on the wall though, this will only get more expensive, never less than it is now.

Medicare doesn't cover sh*t for this because it isn't "medical".

[Zimmeh]

I started caring for family members when I was 18 years old. A month after my 19th birthday, my grandma lost her battle with lung cancer. After I graduated from high school, my dad was diagnosed with heart problems. I took care of him until I was 28 years old, when he passed away from heart and respiratory failure. Nearly thirteen years later, I still have an issue with his death. It has caused me to suffer from depression and anxiety.

Zimmeh

[ksrainbow]

https://caregiver.org/taking-care-yo...ily-caregivers


ks-

[Kelt]

Things have actually been going along okay for a few months now. Mom really likes the place she is living and the people there. I'm relived to know that she has a car and driver (so she's off the road) is eating well, and has social support.

I've hired a couple of periodic "helpers" for things that her lack of short term memory impacts, and that is going well; also we are figuring out how to have a relationship with each other.

I am getting her caught up on deferred maintenance with all the medical folks and part of that was a mammogram that she'd forgotten about for four years. That led to them wanting more images because of tissue changes. No surprise, she's 84 after all but they wanted to be careful because she had breast cancer about 25 years ago.

Well, this morning they called to say they want a biopsy too so I set it up. I told Mom it was probably just old scar tissue or something so that she won't worry too much until we know what is what, but between you and I; I really hope it isn't back. This is a family that doesn't question that we die of cancer, just which variety.

2015 already had way too many "events", neither she nor I need to have anymore for a while.

I hope she's okay, we'll know more in a few days...

[clay]

Originally Posted by Kelt

<snip>



Well, this morning they called to say they want a biopsy too so I set it up. I told Mom it was probably just old scar tissue or something so that she won't worry too much until we know what is what, but between you and I; I really hope it isn't back. This is a family that doesn't question that we die of cancer, just which variety.

2015 already had way too many "events", neither she nor I need to have anymore for a while.

I hope she's okay, we'll know more in a few days...

(((((((((((((((((((((Kelt & Mom)))))))))))))))))))
I totally agree on "no more events for you two this year!!!

Please keep us posted and know you & she are in my thoughts. Will offer you both up to Universe for good news. Hang in there buddy!

[TruTexan]

Hey Kelt,
I hope and pray your mom's biopsy is normal. I know she and you both have had a rough going of things already. Please keep us informed, I'll keep your mom and you in my prayers.

[Kelt]

Originally Posted by Kelt

Things have actually been going along okay for a few months now. Mom really likes the place she is living and the people there. I'm relived to know that she has a car and driver (so she's off the road) is eating well, and has social support.

I've hired a couple of periodic "helpers" for things that her lack of short term memory impacts, and that is going well; also we are figuring out how to have a relationship with each other.

I am getting her caught up on deferred maintenance with all the medical folks and part of that was a mammogram that she'd forgotten about for four years. That led to them wanting more images because of tissue changes. No surprise, she's 84 after all but they wanted to be careful because she had breast cancer about 25 years ago.

Well, this morning they called to say they want a biopsy too so I set it up. I told Mom it was probably just old scar tissue or something so that she won't worry too much until we know what is what, but between you and I; I really hope it isn't back. This is a family that doesn't question that we die of cancer, just which variety.

2015 already had way too many "events", neither she nor I need to have anymore for a while.

I hope she's okay, we'll know more in a few days...

And the hits just keep on coming....

My mother has two tumors, both malignant, grade 3. The "cancer navigator" (team coordinator) just told me I WILL be there for a surgical meeting on the 21st.

I presume surgery in the next week during which I'm also scheduled for jury duty in my own state.

Obviously I will be there for whatever she needs. I just hope to find the reserves within myself that I thought were all used up to be at my best for her.

I'm still doing the paperwork on my fathers death as executor, the estate tax return is due this Friday, the nine month mark.

I just got her back after 30 years, I can't lose her now.

[TruTexan]

Originally Posted by Kelt

And the hits just keep on coming....

My mother has two tumors, both malignant, grade 3. The "cancer navigator" (team coordinator) just told me I WILL be there for a surgical meeting on the 21st.

I presume surgery in the next week during which I'm also scheduled for jury duty in my own state.

Obviously I will be there for whatever she needs. I just hope to find the reserves within myself that I thought were all used up to be at my best for her.

I'm still doing the paperwork on my fathers death as executor, the estate tax return is due this Friday, the nine month mark.

I just got her back after 30 years, I can't lose her now.

I'm truly sorry to hear this Kelt. I wish there was more I could say or do. I'll definitely keep you and your mom in my prayers. Hang in there.