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New to This. Fighting Two Battles. Confused, Stressed, and Utterly Lost.
Posted: Tuesday, October 8, 2019 12:51 AM
Joined: 10/7/2019
Posts: 3

     Hello to everyone, and thank you for taking the time to open and read about my current life situation(s). I just want to start off by giving a quick background on myself, so that you might better be able to understand some of the struggles I am having, and why some things have become so "overly-frustrating and difficult."

     My name is Allison. I'm a 36 year old woman, and mother to a 15 year old girl. I am currently fighting A.S.P.S. (Alveolar Soft Part Sarcoma), a very rare form of cancer - and when I say "very rare" this is what I mean : approximately 1% of all cancers are sarcomas, and the type of sarcoma I have makes up less than 1% of all sarcomas. I have been fighting this battle since March of 2011 when I was diagnosed, and had my first surgery 8 months later. Due to the location of the tumor (in and around my spinal cord), I lost a lot of the use of my left leg. After a lot of rehab, I was able to walk with some semblance of normalcy and continued to be able to do so for several years. 

     Even though there were/are no "approved" drugs to treat what I have, throughout the years I was put on three different chemotherapy treatments (one of which was through a clinical trial), which may have helped slow the progression of the tumor somewhat; each only seems to have worked for a short period of time. In 2014 I had surgery to remove a lobe of my left lung because one of the metastasis had grown too large and was dangerously/uncomfortably close to my heart. After that I was still doing my best to maintain something that resembled a normal life.

     Just a couple of years ago in 2017 I started having problems with walking. My high leg (which was the one I depended on) started to lose feeling, and I was losing feeling and function of pretty much everything from the waist down. I went to see my neurologist and 3 weeks later he had me in for a 14 hour surgery to place metal hardware in my spine and pelvis. I never really regained my ability to walk after that, and have been stuck in a wheelchair since. After a lot of hard work since the surgery, I have been able to regain my ability to stand for short periods of time, and even take a couple of steps with my walker. I've started immunotherapy treatments that I go for every three weeks, which have actually been able to make some progress with my cancer. It's something I never expected, and even one of my doctors explained it to me as "nothing short of a miracle." So, I thought to myself, "You mean I can actually start planning some things for a future? I might actually be able to live my life a little bit... even if it is just a 'short term solution'?" Here I thought I was getting my life back, but have since realized it had already been taken from me once again; this time with the diagnosis my mother received instead of my own.

     Most days I'm just in a moderate amount of pain, which I've learned to live with with the help of an implanted intrathecal pain pump. But there are some days when I'm in so much pain all I do is sit/lie on the couch. I do my best to take care of myself and my daughter, in whatever ways I am able to. And now I'm also back living back at home having to do what I can to help take care of my mother as well.

     Right around three years ago we noticed my mother starting to struggle with some things here and there, but nothing that really "jumped out." I started getting really concerned when she would forget how to do very simple things that never were an issue for her in the past. She would bring her mail over to where I was staying and have me help her "figure some things out" with her bills and other things. My mother had always been such a meticulous keeper of her bills - I never remember her having paid one late in the whole 30+ years of my life. Now I'm going through the mail and making sure the bills are paid every week. And looking back, there were little things here and there, previous to that, that should have "triggered" something in my own thoughts to tell me the something was wrong. I always feel guilty about that, like if I had been able to recognize something sooner could it have made a difference in where we are today??

      *Fast forward to "today"* It seems like each day is filled with arguments and hurtful comments. There are times when I get so frustrated that I end up yelling and then feeling really bad about it after. Most times I just do my best to get out of the conversation, so things don't escalate to that point. When she asks questions and I'm  trying to explain things, I do it at the most basic level of understanding (a five or six year old would be able to grasp it); it truly breaks my heart when she still isn't understanding what I'm trying to explain to her. 

     My mother, who is currently in her early 70's, was always a very smart, meticulous, neat, bright, clean, etc. individual. She was a teacher for 40+ years, and there were a lot of times where she would have to explain things to me. I never had a fear of her putting herself in a dangerous situation, not taking care of herself, or being taken advantage of. Now I fear all of those things. When she goes out for a walk, I always worry that she will look up and forget where she's at or what she's doing and/or end up panicking or getting lost; and this is the same neighborhood she's lived in for pretty much her entire adult life. 

     I have found that there's ABSOLUTELY no point in trying to reason with her in regards to ANYTHING at all; and this is an individual who used to be so reasonable about just about everything. If she told me grass was blue and I took her outside to show her it was green, she'd try and convince me that I'm showing her the wrong grass (this hasn't happened, but with the way things have been, it's a fair example of what many of our conversations are like). It's even a fight trying to get her to take a shower; I keep getting responses like, "It just takes so much to get ready for it..." or "it's hard to get in and out..." and when I push the issue I get, "Fine. I'll take care of it tomorrow..." and yet tomorrow never comes. 

     Even though I know it's the disease and not at all her, I still can't help but feel hurt when she says some really (what I feel to be) very nasty things. She'll say things to me like "Why don't you just get up and go get it," or "there's something wrong with you... what's wrong with you? it's must be the medications you're on..." etc. etc. etc. And then she'll go and make nasty comments about me to my 15 year old. I can't even imagine what it's like for my daughter, living in and amongst this chaos; and then to have her grandmother talk down to her about her mother....

     I'm needing to help her with so many basic things, many of which are difficult for me to do for myself even, due to the age of the house and pretty much nothing being truly "accessible" for me. Simple things, like doing the laundry for example, are difficult because my chair won't fit through any of the doors in the house and I can't easily access the room where the washer and dryer are at. When she needs help looking for - or doing - something that isn't in one of the main rooms of the house, my daughter is stuck having to help with it. She's not even getting to truly be a teenager. It was bad enough that I need help with some things because of my physical disabilities, and now she's also having to help her grandmother.

     I am not an only child, but my only other sibling is living many states away. Him moving back to the area just isn't something that's ever going to happen,  so I feel as though I'm the one that "got the job," so to speak, just because I never chose to leave the area. Please don't get me wrong; I love my mother very much, and it truly breaks my heart to see her like this. I want to be able to help her, but feel at this point I am barely able to help myself in so many things. With the way everything is happening, I feel like I am completely losing any "good parts" of the relationship I had with my mother, and my relationship with my daughter - while really good on some days - has, for the most part, been completely destroyed. I know the disease is hurting my mother and ruining so many things in her life, and it has also taken it's toll on all of those around her. 

     I don't want it to seem like I'm the only one helping her. She does have a very supportive group of friends. There are a couple of ladies who help by bringing her to her doctors appointments (as I have only recently regained my ability to drive, via the discovery of vehicle hand controls), and they make sure she gets out of the house by taking her out shopping or to eat, and they still go see plays at a local theater, which is something they've been doing for years. I'm so thankful that she has such wonderful people in her life. Truly, I am.

      But the day to day things are killing me and slowly driving me insane. I know that with everything that's been going on, it has really taken a toll on my health. Even though I should be feeling wonderful because I was blessed enough to have a positive reaction to my treatments, I am constantly feeling even more worn down than I was before any of this; I'm nervous, with such bad anxiety that I've had to go on medication to help control it, so tired that I'm taking naps during the day like a 3 year old, and just overall "out of sorts." I try my best to keep it together for my daughter, but I know she can see the stress and anxiety breaking through. And none of it is making it any easier to help me care for my mother either! 

Help!! I can't take the constant daily battles and the building pressure. 

Am I SELFISH for wanting to finally be able to live a life of my own? Or am I just the child that got a second chance at life, and had to give it up again because I chose to live in the area where I grew up? 

Putting her in an assisted living facility is out of the question and she keeps fighting me every time I talk about getting someone else to come in and help out. 

HELP!!! What do I do?! Any thoughts, suggestions... ANYTHING is so greatly appreciated. I am so happy to have come across this community; and though I'm upset at the "need" to be here, I'm very happy that a place like this exists.

(And I want to thank you for taking the time to read this. I'm not sure how long I've been typing, but looking at the time I do know it's been a lot longer than I had intended... So yeah, I do apologize for this miniature book that I've left you with).




King Boo
Posted: Tuesday, October 8, 2019 7:11 AM
Joined: 1/9/2012
Posts: 3182

Is Assisted Living out of the question because of finances or her lack of cooperation?

Do you need to stay at her house because of your own situation/finances or are you able to self support yourself and your daughter in your own place?

Regardless of where your sibling lives, it sounds like he needs a good klonk over the head by you with some frank talking.   It will be work, but there is ABSOLUTELY NO REASON, once things are in place, that Mom cannot be moved near him to either a care facility or care under his oversight.

Crying "I'm too far" is a pretty lame excuse no matter what the situation, it's even worse if the caregiver who inherited the mother's care has her own, very serious, life threatening health problems, is not ambulatory, has to deal with a non handicapped accessible home AND is a parent.

The mantra for dementia in a house with children is KIDS FIRST.   It does not sound like a tenable situation.

Do you have your own situation planned?  Wills, DPOA, and guardianship of your daughter to raise her should your own health needs dictate it?    Secondarily, is your mother's DPOA done?

I am sure many will be along today with more input.  

Posted: Tuesday, October 8, 2019 10:55 AM
Joined: 10/7/2019
Posts: 3

Thank you so much for your response, and for taking the time to read my book. I truly never intend to write as much as I do, but once I start talking about something that's important to me, it seems like the words just keep coming out through my fingers. So, I will do my best to answer the questions you asked in your response; I apologize in advance for any that end up being answered "in excess."

Is Assisted Living out of the question because of finances or her lack of cooperation?

Finances aren't really an issue. She and my father had worked hard their whole lives, saved, and planned well for the future. And since my father passed away in 1993, she continued to save and kept planning. She was always very meticulous with things of that nature. She even has long-term care insurance; though, to be honest, I'm not even sure I know how to begin having her benefit from that, or if it's even the right time to look into it. Assisted living is something she didn't want to do until absolutely necessary; and as listed in her POA, we are required to do whatever we can to keep her in her own home for as long as possible. I'm just so lost on what to do, or where to even begin. Most days I feel like my mind is nothing but mush, and my anxiety seems to come to a head more often than not anymore just being here. But I know I can't leave, because she can't be here alone, and I'm not "allowed" to place her anywhere else. It's not really that I want to place her in a home, because truly I really don't. I just don't know how to handle someone I can't reason with, and can't physically help when she needs it.

Do you need to stay at her house because of your own situation/finances or are you able to self support yourself and your daughter in your own place?

Right now, if I was able, I'd be able to find a place with my significant other, and move there with my daughter. Outside of the basic bills, I'm paying for most things in the household (groceries, other necessities like tp, laundry soap, etc.) as well as paying my own bills. While I might not be able to do it completely on my own consistently every month, I wouldn't be doing it on my own anyhow; It would be a true partnership. One that I'd actually be able to go and have a life with if I wasn't "needed" so badly here. I feel like I wasn't even asked if I wanted to give up my second chance at life, it was just expected of me because I'm here. And I mean, because I can't work at the moment, I'm supposed to just give up on taking care of myself and doing the things I need to do to be able to get myself better so I can get to a place where I'm possibly strong enough to do those things again? 

Regardless of where your sibling lives, it sounds like he needs a good klonk over the head by you with some frank talking.   It will be work, but there is ABSOLUTELY NO REASON, once things are in place, that Mom cannot be moved near him to either a care facility or care under his oversight. 

At one point he had said to me that he "mentioned to her" that he could move her into his home as he had plenty of space there, and was told that she didn't want to because this is where all of her friends are. Now, don't get me wrong, I completely understand where she's coming from, because I do know what it's like to be somewhere where you don't know anyone and don't have that kind of support group, so I can't really begrudge him for a choice neither one of us can force her to make at this point in time. But I really could use more help than him flying in for maybe a week at a time (during which time he has spent visiting other people, and maybe is around a few days to do things with mom). It's not that he doesn't help out with some things while he's here, because he does. But it just seems more like he comes in and out for a few days, takes care of a few things, takes her out to eat and to run a few errands, and is always the "good guy" because he's physically able to help her do these things. Up until recently, I wasn't even able to drive, and had a truck I had purchased right before I started losing my legs, that I had to make payments on and could only just look at sitting in the driveway collecting pollen and dirt. So I haven't been able to whisk her away here, there, and everywhere. 

Crying "I'm too far" is a pretty lame excuse no matter what the situation, it's even worse if the caregiver who inherited the mother's care has her own, very serious, life threatening health problems, is not ambulatory, has to deal with a non handicapped accessible home AND is a parent.

I would like to mention that at the time when things started getting worse, I was staying with my boyfriend and my daughter was staying with my mother to help out, and so that she could remain in the same school district (I made her a promise from a young age, that I would never require her to change schools). Now, before I have people looking at me like I'm some crap parent who ditches her kid, I want to make sure the basics of my situation are understood. 

At that time in 2017, I had just gotten that 14+ hour spinal surgery that I had mentioned in my original post. After spending a couple of weeks in the hospital, I was moved to an acute care facility. While there I started having unbearable headaches and nothing helped; it was later found out that I had a CSF leak which was causing these. Also while at the acute care facility, I acquired MRSA; So that landed me back in the hospital for a few more surgeries to go in and remove what they could of the infection. I was in the hospital for over 3 months. (And I would like to mention that, during this time in the hospital, an ENTIRE summer, I didn't get any visits other than those from my boyfriend. I got a couple here and there while I was local at the nursing home, but other than that... Now, I understand my mother doesn't like to make the drive into Philadelphia, as it can be very intimidating if it's something you're not used to doing. But my brother did come to visit during the summer, and I still didn't get a visit. They managed to all take a trip to the boardwalk, but couldn't be bothered to come see me. Mind you, my boyfriend would work 10 hour days, and STILL drive over an hour one way to come visit me almost every night).

When I left the hospital, I stayed with my boyfriend because he works in physical therapy, and as a therapist, was able to continue to help me with my daily rehab so that I'd be able to maybe get back to living as "normal" of a life as possible. During this time I also needed care that neither my mother or daughter would be able to help me with (I couldn't get up to do anything, including going to the bathroom, and needed help doing pretty much everything... which included cleaning myself, picking me up to move me, and my daily exercises to help rebuild the muscle that I had lost by spending 4+months I the hospital and other care facility). 

I would speak to my daughter every day, and we had FaceTime as well. Plus, at the time my mother was still able to drive the local areas and was getting around fairly well, so there were always plenty of visits. It seemed like things were going pretty well until my mother started getting worse. I had my brother, who was out of state, accusing me of being a crap parent and "dumping my daughter" on my mother. He still didn't want to admit there was anything wrong with her at this point, and kept telling me that it was all my fault. That because my daughter was there my mother was stressed out. Kept telling me that it was stress and I was being blamed for it all. "But she told me that there's nothing wrong; it's just stress." Those are the types of things I would hear. I kept trying to explain that she was in denial. He wasn't here interacting with her. 

At a certain point in the beginning of 2018, my doctor decided to implant a pain pump, and after that I moved back into my mother's house. So, now I'm back at the house and trying to recover... do you think that me being there made her "stress" any better? Now that I was back in the house with her, I was seeing even more signs... I noticed the pacing around the house, almost like she was on her way to do something and forgot what she was doing before she reached the other room. She would get out random things that she didn't even need to use, then put them away in weird places.... Yet, it's "just stress," right? It seemed like he didn't even want to listen to what I had to say about the situation, even though I was here living it every single day.

The mantra for dementia in a house with children is KIDS FIRST.   It does not sound like a tenable situation.

Do you have your own situation planned?  Wills, DPOA, and guardianship of your daughter to raise her should your own health needs dictate it?    Secondarily, is your mother's DPOA done?

It's really not the best situation, or even a decent one at this point. In the beginning, it wasn't too terrible, but it's gone downhill very quickly. To be honest, I haven't taken the time to take care of those things that I really should be doing. I need to find a good lawyer that I can talk to and get these things taken care of. What's a DPOA? Is it different than a POA? I don't have either for myself yet. My mother has all of her things taken care of. Her will and living will. She has a "standard" POA and a "medical" POA. We just recently had to go and have them redone. When she did them just a few years back, all of the "power" was given to my brother and my uncle (her brother, who I just found out is starting to show little signs of EOA); I don't think I was even listed on it. I've ben here paying her bills, taking care of her medications, etc., and apparently I couldn't even be trusted as a POA. Now we are both listed, along with her brother still, but at least I am now able to 'legally' help with certain things

Stephanie Z
Posted: Tuesday, October 8, 2019 1:39 PM
Joined: 12/15/2011
Posts: 4218


   I'm so sorry for the position you find yourself in.  However, you need to have a definite plan to move mom into memory care, probably in  the near future. The time is coming when your mom may start refusing to bathe, or change her clothing. Incontinence is also part of dementia and it does not sound like you will be able to assist her when this happens.

    I am not saying that these things will happen tomorrow, but she will continue to decline and before you know it, you will not be able to help her any more.  So please get your brother to help and spend some time looking for a good facility in your area. If they have a waiting list, get her on it. If you have her POA, it will be much easier to place her.

     You are right that you cannot argue with your mom. She does not have the ability to see both sides of an argument. Her cognition is failing.

    I just  posted  "Caregiver information for new forum members" which has a section on communication skills for caregivers. These are a compilation of things family members and nurses taking care of people with dementia have learned over the years. And they help a lot. Please check the list of posts.

     I also thing you should hire a caregiver "to help you" with the understanding that she is to try to make friends with your mom and eventually help her. This has occasionally worked and is worth a try.  

  Please let us know how things are going.

Here's a HUG,

Stephanie Z


King Boo
Posted: Tuesday, October 8, 2019 3:16 PM
Joined: 1/9/2012
Posts: 3182

Wow.  What a tremendously difficult situation.

Do you know what stage Mom is in?

Sometimes all we can do is advance planning for when the time comes (often very suddenly, in the form of a hospitalization).  A hospitalization is often the triggering event for placement.  Deficits in self care and reasoning revealed, and it is the gate family need to initiate placement.

It can be done from home but skills, competency or the lack thereof, require more in depth documentation (need for proxy may need to be documented by a Neuropsychological evaluation or a Geriatric Psychiatrist).

Far away brother should choose a MC and a nursing home (first, second, third choice) so admission can be initiated after a hospital discharge.   You should have your choices in your area, too, in case Mom is too sick to move inter state.

As you are in the house, it is very important you see a Certified Elder Law Attorney (CELA) www. as they can advice about long term planning for dementia and YOU as primary caregiver may benefit - if you are doing all primary care at home, it is feasible to renumeration.

Close by friends usually all but disappear as the disease progresses and usually is not a reason to stay in the area in later stages, sadly though I wish an exception for Mom in this common occurance

Posted: Tuesday, October 8, 2019 9:11 PM
Joined: 6/12/2016
Posts: 764

Hello. I couldn’t read your entire post. About half way through I had to stop. I think you need to put yourself first so you will be able to be here for your daughter. I do not believe in putting a parent before a child no matter how ill the parent is. I hope things work out well for you all.
Posted: Wednesday, October 9, 2019 6:17 AM
Joined: 4/10/2018
Posts: 62

You should not be taking on caregiving responsibilities for another individual when you are sick with a neurologic disorder yourself, with limited mobility and significant pain. Your mother's dementia will progress to a point where literally you will not be able to help - with monitoring her wandering, bathing, toileting, etc.

You need to engage your brother in this. If he is not able/willing to take on caregiving responsibilities now then you need to set up a plan ASAP with a facility or live in caregivers.

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