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Internal Administrator
Posted: Saturday, January 7, 2012 10:52 AM
Joined: 1/14/2015
Posts: 40463


Originally posted by: No Angel of Mercy

I've been raised to be a caregiver since I was about 17.

I was born with birth defects ( I am the original "refurbished woman" LOL ) and so my perspective is unique as I was not expected to live to be an adult.

Since I required such a great amount of help from the family in order to thrive and grow, when I reached the point of being able to achieve adulthood, it was then time to train me in the family sideline - caring for others in the family who may need help so that no one person was overburdened.

I truly do believe that your family makes you ( and they can break you ) but that you cannot do it alone. I am a living embodiment of the "it takes a village" theory for raising a child or to aid elders when it comes their time to begin winding down and being less independent.

So, this then will be my journey for sharing publicly some of the challenges that that I experience as I try and wrap my head around the ever-evolving demands of being a caregiver to an Aunt who appears to have some sort of dementia complicating her already challenging medical history.

Regards,

No Angel
Anonymous
Posted: Saturday, January 7, 2012 10:52 AM
Originally posted by: No Angel of Mercy

Hi, SherylS:

I apologize for not responding sooner, the heading was "Alzheimers.or digest email" and I just presumed that it was a generic note.

As for your questions, who takes care of me or shows me their gratitude; I take care of me with the help of our Geriatric Care Manager. And, regarding the whole gratitude issue, I don't expect it as actually, I'm interfering from my loved one's point of view.

I appreciate your support, and hope you are doing well also.

Regards,
No Angel of Mercy

Posted March 10, 2011 11:00 AM
I've read your posts with interest. You are very articulate and your posts are easy to follow. However, I'm about worn out reading them and I feel that you are the one that is 'caged'!

My best to you as you make these difficult decisions for everybody who lets/makes you be the caregiver for your large family.

What do they do for you to show their gratitude? hmmmm, I thought so. Not much?

There has got to be a place in heaven for you....
Anonymous
Posted: Saturday, January 7, 2012 10:52 AM
Originally posted by: No Angel of Mercy

Fast forward to a year later ( I truly am getting to Auntie's part of my caregiving profile ) and we're burying Mom.

April 29th, 2005, she died on her 47 wedding anniversary, 30 years after divorcing my father. Ironic? Yep.

Whatever factors are involved in Mom's care, we then fast forward to the remaining family members. My FL Auntie was was failing to thrive since she'd moved from Alaska to Florida following her divorce from my Uncle.

As my mother began to fail, I'd stepped up my efforts to help my Aunt ( to run interference ) as Mom just didn't have the bandwidth to both cope with her own health needs and continue to be a long-distance caregiver to her sister. So, following Mom's death, I took over and began being even more active in trying to help Auntie cope as her failure to thrive was immediately apparent.

She'd been on disability for 15 years at that point, and she was slowly going down hill due to depression and anger and a wish to end her life.

Her future hadn't turned out at she planned, and she wanted to take her ball and go home.

No amount of therapy was going to help her battle her personal demons, and I'd been checking on her since 1998 by flying to FL each year, as I knew the loss of my mother was going to be a significant event in her life.

After dealing with 3 hospitalizations for pneumonia and failure to thrive ( while trying to handle the details of my mother's funeral and fighting with Daddy Dearest ) the breaking point for me was when Auntie was 3 sheets to the wind on pain meds and pneumonia meds, and fell - again.

Rather than allowing her to spend the day in bed and miss her flight, I gave Auntie an ultimatim - you're going home or you're going to the hospital for the arm - but you're not staying here. Cousin B is fed up. You've been here 6 weeks, and he wants his life back. Either you're ill enough to require medical care in a hospital, or you're well enough to get on that plane, but you're not going to be allowed to loll in bed and b*tch and moan and pick at everyone. We've all had ENOUGH.

I can be brutally honest when necessary, which is where I get my handle "No Angel of Mercy" because I do what needs to be done, and that includes lancing wounds to help them drain.

I truly live away from my family for a number of reasons, but mostly because I love them and wish to enjoy them without having to get sucked into the soap opera that can be our lives.

I practice diplomacy as a way of life, but when you push me to the edge, the gloves come off and the unvarnished truth comes out. Hopefully, diplomatically, but still very direct.

So, that was the introduction that I got to the fact that Auntie was no longer able to handle her life and that something more - some sense of childishness or entitlement or dr*g abuse ( legal only ) was occurring to further complicate her medical situation.

From that point to now, I've dealt with a number of highs and lows, and 6 years later I'm still convinced that Auntie has some sort of Alzheimers or Dementia and needs help to remain as independent as possible for as long as possible.

These next blogs will detail what I've done to try and help her while not losing my mind ( although you may disagree about whether or not I'm crazy ) .

Since this is a new forum for me, I hope that we can share comments and learn from each other as we both go through the journey to finding a way to help our loved ones while also keeping ourselves sane and safe.

Regards,

No Angel
Anonymous
Posted: Saturday, January 7, 2012 10:52 AM
Originally posted by: SherylS

I've read your posts with interest. You are very articulate and your posts are easy to follow. However, I'm about worn out reading them and I feel that you are the one that is 'caged'!

My best to you as you make these difficult decisions for everybody who lets/makes you be the caregiver for your large family.

What do they do for you to show their gratitude? hmmmm, I thought so. Not much?

There has got to be a place in heaven for you....
Anonymous
Posted: Saturday, January 7, 2012 10:52 AM
Originally posted by: timothy.keene

Hi there, No Angel of Mercy...

Would you become entirely upset if I suggested you remove the "No" from your handle as clearly you are an Angel of Mercy, and being able to pull off the gloves and call the play for what it really is, isn't being crude, rude, or merciless at all.

I am humbled and amazed at the energy you channel into your family's care-giving needs with so much love, fervor, and grace. The level of respect and honor you extend to your Auntie, when her responses are often bitter, hateful, and completely selfish go beyond what most human beings are capable of, and you seem to hardly bat an eye.

You can dance-the-dance with her as smoothly and skillfully as anyone I've ever "seen" or "known" in any of the most active caregiving forums I've participated in (or lurked around).

I have to run and take care of some business right now, but I'm coming back to tell you more of what I think about you and your extraordinary uniqueness.

I just hope you haven't left us and taken your gifts and your story somewhere else more appreciative of what you bring to the table. Somewhere else that was more responsive and encouraging than, from what I can see and tell, the big chasm of dead-air you apparently were greeted with here.

Permit me to offer an apology for that on behalf of the many wonderful people here that will love you and surprise you with their abilities, contributions, and support -- that probably don't visit this particular section within the forum often if at all.

Ok, gotta go. But PLEASE, COME BACK! I am fascinated and intrigued and want some of whatever it is that you've got that most of us don't and would go to great lengths to possess if it could be bottled and sold!

My name is Tim and I'm a caregiver too. My mom, 92yo, AD for 23+ years now, Stage 5.5, i'm the primary, my sis takes her on weekends, but the demands of each day seem to compound mercilessly and I could sure use a good friend like you if you have the bandwidth to spare considering everything you already have on your plate.

Love and blessings to you... hope u get this message.
Anonymous
Posted: Saturday, January 7, 2012 10:52 AM
Originally posted by: No Angel of Mercy

While I won't claim to have been my mother's sole source of support in her final year of life ( I couldn't have done it without the help of my brother and sister and their spouses and children ) I will say that it truly took a village to help care for my mother as she battled COPD.

In denial about her illness, Mom managed to live 17 years from diagnosis in 1988 to her death in 2005 doing what she wanted while remaining largely independent.

However, there came a time when I was sent for in order to come home and bury her. She'd been in the hospital for 9 days, struggling to breathe, and my sister called to tell me that I needed to get home now as the nursing staff feared she wouldn't make it until morning.

Luckily, I already had my tickets purchased for a nephew's upcoming graduation, and I was able to change them and get on the next flight out of CA to MA.

Upon arrival, the converstion with my big brother ( who kindly picked me up at the airport ) went something like this:

" What does the doctor say is the problem ? "

M - He's not sure.

" What is he doing to respect her wishes and move her to hospice ? "

M - She wants hospice?

" Yes. She's been very ill for quite some time, and we've been discussing whether or not it's time for me to move home, or if it was time for her to move to CA in order to retain her independence and quality of life . "

M - Shaking his head and crying, as he's driving me home from Logan Airport in Boston.

" What about her heart? Is it pneumonia? What's he telling you about what steps are being taking to honor her wishes ? "

M - What do you mean, her heart? What's wrong with her heart? ( I shouldn't have been upsetting him while we drove, but this was truly small talk as we were heading directly toward the hospital, and I'd probably not get a chance to talk to him privately once we arrived as my brother truly doesn't talk ) .

You know he's thinking and that there's somebody home, but words can be such bombs in our home for the secrets that are going on, that M simply doesn't speak if he has the option to avoid conflict.

Clearly, my Big Brother "M" was not involved at this point in ensuring that Mom's care needs are being addressed as he's clueless that she has care needs, never mind the various complications that her deteriorating health is causing.

" Yes, she has half a dead heart. She has COPD / emphysema. She has incredibly low blood pressure. She's not supposed to walk up or down stairs ( but she ignores that edict ) and she has memory issues as her failure to use the oxygen that the doctor recommends means that she's putting vanity before her health. ( I wanted to shake him and tell him to snap out of it at this point, but I controlled myself ) . So, do you have any idea of what's being done to get her out of the hospital or make her better ? "

M - nope, no idea. You'd better talk to Baby Sis - maybe she knows.

So, we get to the hospital and the drama starts because Mom smiles when she sees me. Baby Sis has been at her side day and night, as has Big Brother, and yet she bestirs herself and smiles when she sees me. This is the first time she's shown signs of life in days, they later tell me. My sister is convinced that Mom "waited" for me to come home before she'd allow herself to die. See? Lots of drama in our house.

If no one has told you about the biggest challenges to caregiving, let me illuminate them for you:

- sibling rivalry / unresolved issues show up again
- money / someone wants it / others covet it, etc.
- lack of clear direction from medical professionals
- trampling of patients wishes when they conflict with
those of the medical professionals, other family
family members, or the main caregiver.

It's just how it is, and I was walking into a mess of conflict that my training in no way prepared me to address.

So, Mom smiles. I cry. And, over the course of the next few hours I figure out that this woman has lain in the bed starving to death because everyone was too busy mentally burying her to deal with the woman before their eyes.

9 days with little to no food ( that would entice her to eat ) .

9 days with no guidance from the medical staff about options to consider.

9 days of neglect, where she got stabilized despite herself but was slowly starving to death as she lost 35 pounds due to the struggle to breathe while not taking in enough calories to keep a bird alive.

1 lemon donut and a cup of coffee later, my Baby Sis and I were on our journey back into sibling rivalry hell because I dared to ask questions and act.

That's what you're faced with as a caregiver - the need to not be paralyzed in a crisis, and to act even if you're not sure you have all the answers.

So, from there, we got Mom into hospice, and she began to thrive as I moved in with her full time and made sure that her final year on this earth was the best it could be while keeping her at home and respecting her wishes.

She made it easy for me to help her, because she'd planned ahead and also had a similar mindset for dealing with what "was" versus what she hoped her life would be. Mom and I are amazing copers, coping with things that need to be done and falling apart later. It was that example and strength of mind that helped me remain by her side and find the strength within myself to do the hardest thing that I've ever done - just suck it up and deal with putting Mom's final wishes first.

So, that's another chapter in my road to being a caregiver.

Regards,

No Angel
Anonymous
Posted: Saturday, January 7, 2012 10:52 AM
Originally posted by: No Angel of Mercy

May 2008, Auntie is now 65 and out of her mind. She appears to have injested a toxic amount of dr*gs, and is telling everyone to go f themselves as she's out of control and everyone is worried.

I was just there in April, and Auntie is violently angry that I am going to spend a week with her other sister, my MA Auntie, while I spell my cousin so that he can take a cruise with his newly adopted son.

I refuse to fly to FL, but remind Auntie that she's welcome at Cousin B's house ( a place that she's sworn to never go again, as she objected to her antics following my mother's funeral ) .

Auntie is raging out of control for most of the summer as she's furiously angry that I'll be in MA and won't come to her in FL, and I treat the situation like the tempertantrum that it is by involving her eldercare lawyer and asking for someone to go and supervise her help as I couldn't give up my life for her.

Under the care of Take Care Advisors ( an excellent resource for long distance caregivers that the lawyer suggested ) Auntie begins to calm down and to thrive.

She's still got memory and med abuse issues, but she's managing to live independently, and I've planned a cruise for Christmas to the Panama Canal so that she can get out of the house and I won't be trapped hovering over her bed during the winter shutdown from work.

It's a win-win.

I find that Auntie does better if she has something to look forward to, and it only costs me an arm and a leg to keep up with her, but I'm managing.

We go to the Panama Canal with another friend, and I'm appalled at the amount of pain pills she's ingesting, and the amount of wine she's mixing in with the pain meds, but we're coping and I'm putting her to bed when she's overtired and out of control.

Flash forward to March 2009, and she's doing better so we're now going on a cruise to celebrate a cousin's wedding.

The whole family is there to help her cope, and I make sure to plan swims with dolphins and other "bucket list" type items to ensure that she has a good time but doesn't overtire herself.

By this point, she's has one initial diagnosis which indicates that there's a few things going on:

- dementia, or
- manipulative personality disorder, or
- dr*g abuse

But, since Auntie won't cooperate with additional tests because she doesn't like the answers she's hearing, we're at a stalemate for helping her because she's not willing to hear that there are serious things going on.

Following the cruise, I drop her off at her mini mansion on the water in FL ( just to give you an idea of how much she hates living with me an in apartment ) and I go on with my life.

In August 2009, work is sending me to China. Auntie wants to go, and I have to explain that there's no way she's going as I'm there for work and then I'm going home. It's not a vacation as I have no money to vacation as I've just been to Panama and the Caribbean in the last 6 months, and wouldn't be going to China if I wasn't being sent ( and if work wasn't picking up the tab ) .

The next thing I know, she's very angry with me and is scheduling a hip replacement surgery during the same time I'm supposed to be out of the country.

W-T-F ?

We talk, and I remind her that I can't come to her beck and call if the surgery doesn't go well, and that she'll be stuck until I can come to her in mid-September. Please don't do the surgery until then.

Nope. She's doing it.

I get the call that she's had the surgery ( August 26th, 2009 ) on the same day that I get the call that my brother has collapsed and has a brain tumor. Needless to say, August 26th is a day that will live in my memory for many years to come, and I can't get out of the China trip.

So, I am in China from August 28th through September 2nd, and then I'm helping a friend get a break from caregiving her mother ( who also has dementia ) and there's no way I can deal with Auntie in FL.

The phone rings endlessly as she's demanding that her housekeeper bring dr*gs into the hospital / rehab that she's not allowed to have, and I am thankful that Take Care Advisors is on the ground to help manage things until I get get time off to fly to FL as of September 15th.

I arrive to find her home, learn that she's fired Take Care Advisors ( she only agreed to re-hire them since that was the only way she'd get out of the hospital ) and then learn that Auntie took 13 percosets in the first 8 - 10 hours following her release from the hospital.

She's not overdosing, but her journals of what's being taken are so garbled and out of control, that it's a good thing that I got a hotel room as I am so angry at this point that I need my own space while I figure out what has to happen next.

I meet with her eldercare lawyer, who convinces Auntie that she needs to re-hire the caregiving staff, and after a week in FL, I fly home to pick up the already-busy pieces of my own life.

Flash forward to October 30th, and I'm in the middle of moving to a new apartment ( one with elevators, as I think that Auntie will be moving in with me at some point sooner than later ) and get the call I've been dreading.

She's OD'd again and is in the hospital.

No, I'm not coming. Call the necessary folks, and I'll plan to see her at Christmas. I told her in September when I was there ( 6 short weeks prior ) that I was out of cash for trying to help care for her, and that I wasn't going to deal well with her tempertantrums.

I couldn't make her live if she didn't want to do so, and I wasn't allowed to put her in care as long as her lawyer didn't agree that she needed help.

I go home at Thanksgiving to check on my brother, again incurring a weeks' worth of costs for an already-strapped budget, and he's also in denial about his brain cancer but is cooperating with his care plan and tolerating the chemo and radiation well, so I feel better that I've laid eyes on him and everything is going as well as could be expected.

I then fly down to FL at Christmas and remind Auntie that we need to keep busy and have fun.

However, she's still not happy following her hip replacement in August, and she's unable to do very much as the back / hip pain is as bad as ever and she cannot cope.

Pills and pain patches are everywhere. The dogs are being neglected and soiling in the house. It's absolute chaos, and I'm glad that she has a housekeeper as she's clearly unable to help herself.

It was a quiet, gentle Christmas, and I go back to CA with the understanding that I'll be heading to Boston for a quick weekend visit to do my taxes and check on my brother, but end up canceling that trip ( and putting off doing my taxes ) while I plan to come back to Boston in June for his youngest son's graduation from high school.

Life is calm, and I take a breath.

I get Auntie to agree to travel up to MA for a hotel-based vacation so that she can see the family and enjoy visiting without living with my cousin B, and all is good.

But it's not. Auntie OD's twice in June, and I'm convinced that it was another ploy for my attention or fear or traveling on her own.

I fly down to see her on June 20th, the day after they released her from the hospital with a stern warning that they were going to prosecute her for dr*g selling or failure to thrive or something, but that they are not going to allow her to off herself on their watch. 3 OD's in less than 9 months isn't an "ooops" it's either a cry for help or a sign of a bigger problem for being able to manage her meds.

With the help of the housekeeper, I have all medicines of any kind removed from the house before she gets home from the hospital, and I walk into a full scale argument about who took her meds before I've even unpacked.

We spend an entire week dealing with her issues. Seeing the lawyer about next steps to take to help her, and setting plans in place to move her to CA while I sue for conservatorship as she's clearly beyond the point of being able to manage her care situation.

Flash forward 9 months later, and she's finally getting closer to a dementia diagnosis since she's gotten the Aricept Rx, and I feel like we're finally making progress for helping her be better.

It's been a long journey to get to here, and I've used up almost 2 months of Family Medical Leave benefits from the big fruit company while trying to get her stabilized, but it is what it is.

Adult Protective Services has now become involved as Auntie feels that I'm abusing her rights by simply stating that she probably has some sort of family-genetics dementia, and we continue to try and figure out how to make her well.

So, that's the summary to date. I'll continue more later if you're interested. But for now I need to get out of the house and get some errands done.

Regards,

No Angel of Mercy
Anonymous
Posted: Saturday, January 7, 2012 10:52 AM
Originally posted by: No Angel of Mercy

Since every blog is different in its design, I'll keep this summary going until I complete it.

I'm part of a large family. There were 13 children in my grandmother's family who survived. From those 13 grands, I have approximately 84 living relatives. Yep, I know my cousins out to the 4th branch of the family tree.

Raised in New England, where no one moves far and they've been in the same area for a couple of hundred years, I left my clannish habits behind when I moved to sunny California, but I didn't abandon my training for being a good member of the family, or for keeping close contact with the relatives.

While it seems funny to say that I ( the middle child ) was the one chosen to manage my mother's affairs even though I lived 3,000 miles away and she had a male and female child within 1 town of where she lived, that's just how it worked out.

I never married, not wanting to pass on the birth defects that run in our family. And, I've never regretted my decision as I've learned that Alzheimers or Dementia also runs in that same family tree.

I'm not saying that my choice is right for everyone, but we have so much going on in the family tree for hidden birth defects, and I endured so many surgeries and illnesses before the age of 10, that my mind was made up long before the biological clock kicked in.

And, luckily, my biological clock has never overruled my brain for knowing that I just am not parent material and would not have been the right person to cope with birth defects that I may have had a hand in passing on to the next generation.

It just wasn't my way.

That being said, though, it seems that my choice of a flexible career ( I freelance. Normally working for the big fruit company to negotiate their contracts for bringing new services into the company ) was the best choice to help me be available upon demand as I cope with life's changes.

So, I've been a contract negotiator ( lawyer-wanna-be ) as well as a receptionist, secretary, security guard, call center phone agent, stuffed PC boards and assembling products, etc., etc., etc.

My favorite job was as a chambermaid for Hilton while I was growing up, and I guess I took that role of service to heart as I've worked my way through the highs and lows of my career to be where I am today - again unemployed or "under" employed while I put my caregiving role first and try and find a way to care for the person in distress.

So, that's more about me.

Regards,
No Angel
Anonymous
Posted: Saturday, January 7, 2012 10:52 AM
Originally posted by: No Angel of Mercy

Well, we had another visit from APS, as I wrote about earlier this week. But, following that visit I'm busy picking up and putting things away ( we're still trying to get the stuff organized from Auntie's recent unloading of the POD ) and I come across a number of gated community or assisted living resources that Auntie's hand-written in her medicine log.

Sigh.

These are all places that we checked out, and which Auntie vetoed for one reason or another. And now they are listed as "new" places for Auntie to consider. She has absolutely no recollection of going to see them, and she has no idea of her own limitations.

We talked about her notes last evening, for whether or not to carry those notes over to the new medicine log, and she dismissed all those notes as "I know! You don't have to tell me that I've already seen them!" even though she wouldn't have written them down if they were something she actually remembered without prompting.

She's being very secretive about what she's going to do and where she's going to live ( very angry and teenager like ) even though I've told her that she's free to live anywhere - she doesn't need to live with me.

Auntie's in full "victim" mode, and I'm the parent or the bad guy because I make her think about things ( such as capabilities and consequences ) that she doesn't want to think about as she struggles to find independence away from me or anyone else that she cannot overrule or bully into allowing her to hurt herself.

To give you an idea of how in and out of it she can be in a given day, Auntie didn't know how to operate her bed during our conversation. Seriously. Auntie has a fancy adjustable bed that we just got set up for her 2 weekends ago, and which she was adamant that she HAD to have in order to sleep due to her back / disability issues.

Since she's had the bed installed, she hasn't used any of its features. I think I now know why... She doesn't remember that it HAS features, or she doesn't remember how to operate the controls.

Flash forward to last evening, and Katie, my wonder kitty, is hiding under Auntie's bed. She is clawing the underside ( as she does when she has a place to wreak havoc ) and while I clapped my hands and stomped my feet to startle her and get her to move out from under the bed, Miss Katie is feeling feisty again and she's not quitting. She's misbehaving, and I'm going to have to get down on my hands and knees with a broom to wrastle with her to get her out of the room so that she doesn't continue damaging the bed. Sigh.

I looked at Auntie and I said, " Turn the bed on. Make it move or vibrate or something, and that will scare the crap out of her! " We smiled conspiratorially and I waited for her to press the buttons. And waited. And waited.

It was sad.

Auntie has had this bed for years, and should have been able to operate it. "Should have" being the operative word. She was clueless, and it was yet another example of how many little things are leaving her on a daily basis. Things that she used to be able to do, and things that she should have been able to figure out ( due to past use ) in under 5 minutes. She eventually figured it out, but it was painful to watch her trying to remember what the control was ( she first grabbed the TV remote ) and then figure out how to operate it to get it to move.

This is the woman who is adamant that she can live alone, and that she wants to drive a car. She thinks she's able to get behind the wheel and drive, yet she cannot figure out the controls of a bed that she operated in December and which she's owned for years.

I tell you that to tell you this - tracking and analyzing the impact of brain damage is to concentrate on the small details and notice the insidious bits of missing pieces so that you can try and figure out how to get your loved one the help that they need in order to try and remain independent longer. It's not about being picky over the smaller things, but truly understanding what's being lost as the person you're caring for tries to cope with the world around them.

Alzheimer's or Dementia or Frontal Lobe damage ( or whatever it is that they eventually decide that Auntie is suffering due to her confirmed brain damage ) is a tricky beast. Maybe tomorrow, she'll remember how to run the bed. Maybe she can only remember how to run the bed on alternating weekends. Maybe she can run the bed in the morning but not the evening. Or, maybe she can run the bed in the evening but the morning is no longer a better-functional time. That's how it goes with what I've read and seen in figuring out her version of dementia.

One major breakthrough this week, though - since she's been on Aricept, Auntie's managed to finish a book that she's been reading for the last 8 months. Truly, I kid you not! ( wild cheering and sounds of the crowd roaring its approval ) She finally finished David Balducci's "True Blue" and that's within a week of starting Aricept.

This is something that I've been asking for since we began this journey in July - is it Alzheimers, and can she be put on medicine to help her improve her quality of life?

Well, since getting to the Alzheimers ( dementia or whatever impairment ) diagnosis takes about a year and is based on a series of eliminations of other factors, I'm thinking that we are finally on the right track.

The MRI from Stanford in October already proved that she has brain damage consistent with years of pain and opiate use, and that it's causing cognitive issues. From there, we've continued to seek answers for what to anticipate as likely outcomes, and options for her to consider regarding enhancing or maintaining her quality of life.

While the OATS program ( Older Adults Transition Services ) has been the most frustrating period of time for trying to use cognitive behavioral therapy to see if they can help her improve her situation, they have finally dismissed her with a note indicating that they've done what they can for her, but that she needs more resources than they offer.

While one of her nurses at the OATS program was certain that she is showing all the signs of frontal lobe damage ( the out of control rages and anger, and inability to handle routine ) it's not yet an official diagnosis as we continue to try and find ways to motivate Auntie to participate in her life and remain as independent as possible.

OATS did the best they could for her, and my only frustration is that they didn't share with me that she needs more services than they can provide, or any recommendation as to what those services SHOULD be. They simply discharged her as having reached her limit in the program, and wished her a good life on her way to wellness. they were absolutely silent ( until I saw the discharge forms ) that she was beyond their ability to help.

What good is a program to help your loved one, if they aren't clear with everyone ( including the caregiver ) upfront?

Anyway, the Aricept med is not a cure-all, and it's not fixing everything ( as highlighted by the bed control incident ) but it's making a difference to improve Auntie's quality of life.

Auntie has a possible helpful med to shore up her paranoia and calm her uncertainty as she feels under attack because I'm trying to get her the help she needs, and forcing her to face the fact that OD's and living in denial weren't working well for her.

Just the simple step of being able to sit and enjoy a book and complete it is major progress for her. And a balm for my own battered spirit as I watch Auntie try and cope with all the changes in her life, and my orchestrating her of day to ensure that she stays active and finds some joy in living.

We've been butting heads quite a bit because Auntie's adamant that there's nothing wrong with her staying in bed 24 x 7 and being allowed to OD if she wants. But, as we begin our 9th month of living together we're coming up with a routine that works more often than it doesn't. Finally.

It's not perfect ( our living situation ) but it's the best I can do for now for the both of us. As I promised many years ago, I would do my best to keep her independent as long as possible. It's been more of a challenge than I expected, because my Mom actively participated in her own care and understood that being in need of assistance was hard on both the caregiver and the person being cared for. Plus, I had my brother, sister and their spouses and children to help with the challenges of care. Auntie, Mom's sister, has no such realization.

So, in caring for Auntie, we both have bad days and good days, and we frustrate the heck out of each other upon occasion. But, we're trying to find fun things to do together or for her to do for herself.

We went together to her swimming therapy this week, so we're trying to keep her moving even though she's dropped the physical therapist ( due to cost worries ) even through the therapist was critical for ensuring that Auntie keeps moving and exercising safely in her thermal therapy pool.

One of the key adherents for battling dementia as long as possible is the admonition to keep on moving. We've improved her movement by 100% on a daily basis, and that's amazing progress for helping Auntie be better day in and day out.

With the help of all of the specialists that have aided her over the last 9 months, Auntie's increased her endurance for being up and out of bed by 100%. She can now be active for about 6 hours in a day ( vs. her original 3 ) without having to then spend days in bed recuperating or having a childish meltdown due to exhaustion from taxing her reserves.

And, as I look back on this journey and worry about her upcoming trip to Las Vegas, I take heart in the fact that she's doing better and that she needs to be able to be free to try new things.

Heck, Auntie hasn't left her neighborhood without supervision or by-her-side assistance for at least the last 5 years.

The last time she traveled unaccompanied was when my mother passed away, and Auntie traveled to and from the funeral by herself. I can date her ongoing failure to thrive to May/June of 2005, following our mother's funeral and my packing her on the plane to go home with a broken elbow. ( After 3 hospitalizations for pneumonia, plus misusing her meds and falling and breaking her elbow, I finally packed her up and put her on a plane to go home as we couldn't deal with her issues, she wouldn't accept help, and she wasn't bad enough to be hospitalized against her will ) .

Since that time, I've flown down to FL to check on her a couple of times a year. I've also orchestrated the details and taken her with me on cruises ( the most stress-free way to travel with a handicapped person ) , handling the dog care needs, planning of traveling and forecasting potential trouble spots to avoid landmines and ensure that Auntie can have a good time despite her increasing frailty.

Despite her complaints to the contrary, I didn't want her to have dementia. I didn't wish that this illness which has taken such a toll on my mother's side of the family would concentrate on her, but that's how our arguments evolve sometimes. Auntie hates it when I tell her, " Look, it is what it is... " and she has no concept that the illness I'm trying to help her with may someday befall me, too.

Dealing with what is in front of us, as well as exploring the worst-case scenario before it becomes a possibility is the best way I know to prepare for and remain calm in a crisis. If you've thought of the worst thing that could happen, and figured out a plan, then there's nothing more to worry about, right? Seems silly, but that's what works for me for basic coping skills.

After our Mom died, I was faced with another caregiving situation that I stopped in 2009. While I was able to tell a prior boyfriend that I couldn't be my boyfriends caregiver because I wasn't strong enough to be there for him at the end of life, especially considering that I disagreed with his failure to cooperate with his doctors care recommendations and COPD was killing him just the same way that it killed my mother. I just can't find that same strength when dealing with Auntie. Because she's not in her right mind, I can't leave her to figure this out on her own.

Our present situation is different, as Auntie has so many medical complications in addition to the mental health challenges, and I fear that she will pass away if it comes to the point where she has to be institutionalized.

Personally, I think that she could thrive in an assisted living situation, but she's adamant that she won't be "caged" ( her words ) and would hate the routine, so I am continuing to try and keep Auntie active and independent while also realizing that there may come a time when we have to either get in a live-in caregiver, or she may have to be institutionalized.

No one person can be everything to another person in normal circumstances, but in caregiving situations one has to realize that the caregiver must also remain healthy and safe, or it's a failure waiting to happen.

So, all of those factors bring us to today, where I'm honoring Auntie's wish to go to stay with friends in Las Vegas for a week. She can't make a plan and stick to it, so she needs supervision for accomplishing any goal so large as planning an outing for herself. And that's before we involve planes and TSA and other forms of independent transportation where she has to remain focused and get herself from point A to point B.

Knowing that her life may be much smaller as the future evolves, and as she fights so hard to resist tools ( such as a scooter to help her get out more to walk the dogs and go shopping without exhausting herself or putting her behind the wheel of a car on a public street ) I'm doing what I can to enable Auntie to achieve her goals where there are reasonable safeguards and when she seems unable to complete those plans for herself.

I'm also worrying about whether or not helping her do something that she cannot accomplish on her own is a good idea or a bad one.

So, I'm doing what I can to figure out where the new boundaries are for self-determination by trying to plan this Las Vegas trip to avoid any landmines that can be foreseen. I'm escorting her through Security so that she doesn't have to deal with authority ( i.e., "argue" or "vent" ) to the powers-that-be and end up in trouble like she was at Christmas, where they kept her to the side for an inordinant length of time and practically stripsearched and detained while I was busy getting the dogs through the TSA. My friend was with her to keep her somewhat calm, and 'm hopeful that I will get a weeks' vacation while she will also have fun in a safe setting with friends, while I still worry that this trip may be too much for her.

Seems like I sound like her mother more than her niece, but that's one of the challenges of caregiving dementia patients - you worry about your loved one, and you want them to be able to do more while realizing that they are slowing down and losing bits of themselves along the way. You need to find a way to respect their rights while allowing them an opportunity to succeed ( or fail ) and you need to figure out where you are making things worse ( possibly arranging something that they cannot accomplish, causing more depression or anger ) and where you are making things better ( arranging something that they cannot accomplish, but which should be an achievable goal with enough forethought and careful planning ) .

Only time will tell if this Las Vegas trip without a companion by her side is a good idea or a bad one. But, I think this is a next-crucial step in our relationship for figuring out where the boundaries are and understanding whether or not the Aricept is truly making a difference in Auntie's quality of life.

On the plus side, I'm going to also get a mini-vacation ( I'll still have her dogs to contend with daily, so it's not a true vacation ) and I'll have some time for myself to catch my breath and determine whether or not I can fit in some time with my new boyfriend so that we can both rest and recharge from our family and caregiving duties.

The first rule of caregiving remains, "first, take care of yourself or you'll be no good to the person you're trying to help" and just like the oxygen speech on plane departures, they are absolutely right.

I hope you're all finding a way to take time out for yourself as you're busy coping with the multiple demands on your time and trying to anticipate ways for everyone to just relax and have fun so that the disease doesn't take over your world and consume your every waking moment.

Regards,

No Angel