My Christian Family

[velkyn]

My ma-in-law came back from the cancer doctor's with a big jug of oxycodone syrup. Rarely (never?) have I seen so much narcotic in one place. If we lived in Florida, we would have to bar the doors to keep Rush Limbaugh from breaking in. I am tempted to ask her if she would like it served in a shot glass, on the rocks. Whoo-hoo!

wow.    but on the serious side, people have been known to try to steal drugs they know are in houses( and get shot by a gal who asked permission from the 911 operator: http://www.cbsnews.com/8301-504083_162-57352344-504083/okla-teen-mom-asks-911-for-permission-fatally-shoots-intruder-on-new-years-eve/)
I once was given a large bottle of scopolamine syrup for mysterious pains.  Intersting stuff, didn't notice any truth serum effects.   

[kin hell]

Just a couple postcripts for anyone who's still following.....

I got my mum in to the new home, near where we live, on the Friday before Christmas.  She loves it there, and she's being well looked after.  Her state pension, teachers pension, widows pension, attendance allowance, and the interest on her half of the sale of the house, will effectively mean she can live there forever, so that's another worry out of the way.  I can get in to see her a couple times a week, and although she thinks I'm her cousin, we still have some nice visits.

So that's the good part.

Good news to hear.

Actually that post should've been titled "the good, the bad and the ugly" 

The bad and the ugly sure take some living with (cue grinding of teeth), but their effects too shall pass...

...........best wishes mate

[Chronos]

Oh, one final thing I can't recall if I mentioned or not.  The guy who stopped them seeing their daughters grandchildren....I wrote to him to say there was a bequest for the twins, but in light of the letters from him basically saying "I don't want any more contact", asked if he wished to refuse the bequest?  He - a True Christian - sent back a two page letter telling me it was all my dad's fault, what a bad and stubborn and prideful man he was (all in a letter to his son less than a month after his death, remember).......at the end of which he said he would take the money so that at least some good would come to the twins from their grandfather.....

With the money you send to the twins, I would send a letter including a few bible verses that the asshole violated, especially the part where you are supposed to honor your mother and father (which includes all mothers and fathers). I would tell him that while we can't choose our family and we don't always like what they do, they are the only family members we have and unless their actions are damaging or unforgivable, we should still honor them with some level of attention and assistance. If that means bringing the grandkids to see the grandparents once a month while he sits his ass in the car listening to the radio, then so be it. Assuming the bequest was in the form of cash (not registered or real property) and, therefore, otherwise untraceable, you at least honored your father's request by giving money to his grandchildren. Too bad the asshole couldn't have returned the favor with a little bit of grace, appreciation and understanding while the grandfather was alive. Tell him to remember that fact when he becomes old, cranky and unlikeable. It's called turning the other cheek, based on the Sermon on the Mount (Matthew), which is basic Christian doctrine. Or, he could just continue to be an egotistic asshole and reap what he sows (Galatians).
 
Mind you, I have a way of expressing myself, especially in writing, that doesn't include casual language like "asshole", so that after reading more eloquent language that is equally caustic and derisive the reader will normally think "why didn't the guy just call me an asshole?"

[Chronos]

My ma-in-law came back from the cancer doctor's with a big jug of oxycodone syrup. Rarely (never?) have I seen so much narcotic in one place. If we lived in Florida, we would have to bar the doors to keep Rush Limbaugh from breaking in. I am tempted to ask her if she would like it served in a shot glass, on the rocks. Whoo-hoo!

wow.    but on the serious side, people have been known to try to steal drugs they know are in houses ...

Some of whom are those who provided or delivered such drugs. When I worked as a health insurance claim rep (quite some time ago), I got into an argument with a home health care agency that was providing hospice care to our insured. They sent us a bill for delivery of over $20,000 worth of morphine the day before the insured died (a 60-day supply to a hospice patient in month 6 is a bit optimistic, isn't it?). I asked them for a deduction for the return of the sealed (unused) morphine doses and they said there weren't any. I told them that was bullshit -- either they have a drug dealer in their employ who confiscated a controlled substance or they are submitting a fraudulent bill. No matter which it was, we weren't gonna pay the bill. They never called back to challenge me further and they didn't get any money from us.

Beware of a large quantity of pain medication in the house. It's dangerous for more reasons than consumption.

[Anfauglir]

With the money you send to the twins, I would send a letter including a few bible verses that the asshole violated, especially the part where you are supposed to honor your mother and father (which includes all mothers and fathers)......

This I like - I did consider thanking him for the Christian compassion he showed in his last letter to me.....and the end of the day though, I just couldn't be bothered. 

[Tykster]

My ma-in-law came back from the cancer doctor's with a big jug of oxycodone syrup. Rarely (never?) have I seen so much narcotic in one place. If we lived in Florida, we would have to bar the doors to keep Rush Limbaugh from breaking in. I am tempted to ask her if she would like it served in a shot glass, on the rocks. Whoo-hoo!

I've had some of this stuff, it works a treat

[Anfauglir]

Yeah, I know I'm necromancing....but it saves having to go over all the background again.

9 months along, and my mother's dementia has progressed quite a bit.  She still recognises me as someone she knows when I visit, but usually as her cousin.  One rather nasty time, it was as someone she fancied as a boyfriend.  She's lost all memory of the rest of the family, and seems to be now living in her 20s: talks often about what she does with her parents (dead some 50 years now), and refers to herself by her maiden name (2 marriages and about 60 years ago now).

The other day, we were looking at a bird flying in the garden.  Stuck for conversation, and wanting to get her brain started, I said "what do you think it would be like if we could fly?  Do you think we would fly to the shops, or do you think we'd be too lazy and still go by car?"

Her response was "oh, I used to be able to fly you know.  I don't any more though".  Not a joke, or a legpull, this was completely serious.

So that is the extent to which she is gone.  Her mobility has also plummetted, and she now shuffles along where only a year ago she would be strolling along with no worries.  Unfortunately, the home she is in has told me that because she needs more one-to-one constant care, I need to look for somewhere else.  She needs someone with an eye on her all the time, because little things can set her off and she will shout and kick, and it is upsetting the other residents.  They simpyl don't have the levels of staff available to have someone there to distract her before it goes off.  They're very nice about it - no rush - but I've got to go through all the searching for homes again.

I said before I could see why people stop visiting, and to be honest I don't think I'm far off that point now.  Last week I stood across the road for several minutes before I could force myself into crossing and going in.  I know that in an hour I am going to see her again (I go every Tuesday in my lunchbreak) and am dreading it.  To the extent that I am thinking about homes further away rather than nearer so that I have an "excuse" not to visit as often.

She isn't my mother any more.  She still looks the same, but the person inside is someone I have no knowledge of or connection with - sometimes disturbingly so.

Being totally honest, I' just waiting - and in fact hoping - that she will soon die.  Selfishly, yes, for me, to take this dark cloud away, but also for her.  She spend so much of her time now in a world that she doesn't understand and can't connect with - she basically is unable to read anymore, and can't grasp the words to hold a conversation, even if she had a common frame of reference to work with.  Often she is sad, or scared, or bewildered, more so now than she is happy.

That's all.  Thanks again for letting me vent.

[Bereft_of_Faith]

Very very difficult.  I don't know if anyone can quantify how bad it is for your mum, but it is getting increasingly bad for you.  I'm sorry you have to go through this.  This kind of thing can be agonizing. 

The only thought that has ever brought me any solace is that although one may be suffering, suffering is a nearly universal condition for everyone, sooner or later.  When we struggle and suffer, we are participating in one of the defining characteristics of life.  To say the least, it isn't much, but...

My thoughts are with you -BoF

[Traveler]

I'm so very, very sorry. We lost my dad to dementia, and the last year or so was very, very difficult. We were lucky, in a way, that his health had deteriorated enough that he was wheelchair-ridden, so at least wandering off wasn't an issue. Once he slipped into "final stage" he died within a week or two of that, for which we were all very grateful. It has to be one of the least dignified ways to get old.

For what its worth, we watched my grandmother go through it too. My mom and dad were both VERY adamant that if it happened to them we were to put them in a home and do what WE needed to to get through it. And that they would NOT want to live long past the point where they were lost and confused. My dad was a math and science teacher. To watch him lose all that he was is difficult to think about, even now, a half dozen years later.

Hugs to you, and I do think you should do what you need to do for you. She doesn't know you're there, and she will not remember that you've been there. As long as there are people taking good care of her, visits are for you, at this point, not for her.

I don't know what else to say, but I'm here if you want to talk about it or have questions, via PM or on the forum.

[Quesi]

Anfauglir, I am so sorry that your mother is gone, and that the fragments of who she was reside inside of her frail body. 

My advice would be to continue to take your lunch breaks on Tuesdays.  It is such a small chunk of time out of your week, even though it takes a disproportionate amount of your mental and emotional energy.  Try to imagine how exhausted she was when you woke her up squealing for those 2 AM feedings.  Imagine those long-forgotten sleepless nights in which she sat vigil by you monitoring your scary fever.  Neither of you has any memory of those events now.  But YOU know they happened.

Sit vigil by the shell of the person she was, as a way of honoring the person she was. 

When her body dies, I suspect that you will be glad that you gave all that you had to give. 

[screwtape]

I saw a documentary on Alzheimers and dementia, on HBO I think.  One woman was interviewed who lost her husband to Alzheimers said early on in their relationship they promised each other to not put the other in nursing home.  It made it so hard for her with feelings of guilt and betrayal when she had to put him in a home because there was no way she could care for him. 

Those kinds of promises are so counter productive and selfish.  I made my wife promise to put me in a home if I need it and to not feel guilty.  If that is what needs to happen, I do not want her to feel guilty over it.

She started to pack a suitcase for me right away.

[nogodsforme]

^^^How old are you again?

This is a timely necro, because we are in the process of moving Nana in a home. She has been living with us the past two years since Papa died. And the cancer is slowly taking its toll on her. She may have six more months, maybe longer. Who knows? At least she is still coherent and can get around, but she is in a lot of pain.

My own father, always a difficult person, wandered off until he had his foot amputated (for diabetes, not to keep him from wandering!) and then was argumentative and irrational until the end. Although that was not any different from when he was younger.

I don't want to end up like some of the patients I have seen in nursing homes, sitting in wheelchairs, staring at the tv, waiting to die. And that is the best scenario. Dementia, wandering off, removing clothes, being incontinent, being incoherent, being frightened and confused all the time. Not fun for anyone. When there is nothing that brings you any joy anymore, and you are just in pain and don't even know why, when there is nothing left of your personality, what is the point?

I am haunted by what my daughter, age 13, said as we watched her beloved birder Papa in his last few weeks: incoherent from the morphine; fighting to get out of bed to care for his beloved birds, although unable to stand or walk; using a diaper; legs weeping fluid that soaked the bed sheets; exhausting all of us as we took turns sitting with him; holding him up when he insisted on standing; trying to keep him calm; wearing Nana down as she tried to be with him round the clock. And costing a lot of money for the nursing care besides.

"Papa's not happy. He's ready to go be with his birds. Why can't we just give him a pill?"

Why indeed. What is sacred about life at that point? When I get there, I want a pill before my relatives run out of money or exhaust themselves into illness.

Hang in there Anfauglir. We are with you.


 

[Traveler]

..."Papa's not happy. He's ready to go be with his birds. Why can't we just give him a pill?" ...

I know, right? We'd be considered cruel if we made a pet live through that, but if its a person we can't. Unbelievable. For what its worth, Washington state has a "Death With Dignity" law. If one is terminal with six months or less to live, one has the right to a life-ending prescription.

An article from 2009 ...

http://www.usatoday.com/news/nation/2009-03-01-washington-assisted_N.htm

[nogodsforme]

I voted in favor of that law. Problem is with the six-month diagnosis. Nana had six months to live when she was diagnosed with the cancer at age 84. But you can't tell how long you will live. She decided (wisely, I thought) not to do chemo and to only do pain management and hospice. That was two years ago. No treatment, people. She wakes up every morning wondering why she is not dead.

We have convinced her, with difficulty, to spend all her money in the time she has left to enjoy herself. We took her to Montreal and to Hawaii; she has gone to Ireland and we all went to the east coast to see where she was born and to meet the few childhood friends she has left. (One woman, Miss Anna, weighs 74 pounds fully clothed. I have never seen an adult that tiny who was not Asian.) We just took her to the new Meryl Streep sex movie and she laughed her a$$ off.

So, she was not ready for the end when she was diagnosed. Now, who knows?

[Traveler]

I agree about the six months. Its a start in the right direction though.

[Quesi]

We have convinced her, with difficulty, to spend all her money in the time she has left to enjoy herself. We took her to Montreal and to Hawaii; she has gone to Ireland and we all went to the east coast to see where she was born and to meet the few childhood friends she has left. (One woman, Miss Anna, weighs 74 pounds fully clothed. I have never seen an adult that tiny who was not Asian.) We just took her to the new Meryl Streep sex movie and she laughed her a$$ off.

So, she was not ready for the end when she was diagnosed. Now, who knows?

These are the gifts we all dream of giving loved ones during their last years of life.  Both of my parents died in recent years, and although their deaths were not as painful as Anfauglir's mother's deterioration, I did not have the opportunity to share the end with either of them in such a way. 

My sweet father's went into the hospital for cancer surgery with an excellent prognosis, and the understanding that he would be home in two days after which he might need radiation or maybe chemo.   But the surgery uncovered more cancer than expected, and a pre-existing condition created serious complications after surgery, and he didn't leave the hospital for months, at which point, we did in-home hospice care, which lasted just one short week. 

My boisterous mom died suddenly of a heart attack.  She had had a couple of mini strokes, but the doctors said she would be fine.  She had lost her ability to write with her hand, but she could type on a computer.  Her last day of life we met with a social worker to talk about getting control of her hand back, and starting physical therapy.  And then we went to a lecture on Middle Eastern politics.  She turned down a card game with friends that evening, and said she didn't want the wine that I had bought until she cleared it with her doctor.  And I woke up in her home to find her dead.    I was in the middle of the process of adopting my daughter, and my mom was running around with pictures of her and showing all of her friends her granddaughter, and bragging as if she had given birth to the child herself.  We were scheduled to travel to Guatemala later that month.  She never met my little girl.  But she loved her. 

[Chronos]

I said before I could see why people stop visiting, and to be honest I don't think I'm far off that point now.  Last week I stood across the road for several minutes before I could force myself into crossing and going in.  I know that in an hour I am going to see her again (I go every Tuesday in my lunchbreak) and am dreading it.  To the extent that I am thinking about homes further away rather than nearer so that I have an "excuse" not to visit as often.

She isn't my mother any more.  She still looks the same, but the person inside is someone I have no knowledge of or connection with - sometimes disturbingly so.

Being totally honest, I' just waiting - and in fact hoping - that she will soon die.  Selfishly, yes, for me, to take this dark cloud away, but also for her.  She spend so much of her time now in a world that she doesn't understand and can't connect with - she basically is unable to read anymore, and can't grasp the words to hold a conversation, even if she had a common frame of reference to work with.  Often she is sad, or scared, or bewildered, more so now than she is happy.

Don't feel bad. There is no worse death than one from dementia, but it the condition rarely affects the afflicted -- it always affects the caregivers. At her stage of dementia, reverting to earlier and earlier times, I don't think aspiration of food is far off and that is a common cause of death for those with dementia. That is how one of my aunts with dementia passed; the other had a heart attack.

While visiting your mother can be disheartening, to say the least, you could still visit and help the staff with all the patients, not just your mother. Whether it is to serve food, help them take a walk or play a simple game like word association (in which the outcome is entirely irrelevant) or knocking around a beach ball, those who provide help to everyone at the home would likely enjoy some help and some contact with people who don't take care of patients every day. If you know how to sing or play a guitar or piano, then go provide them some entertainment. That would make you feel less guilty because you are helping your mother, even if indirectly, and you could spend your time productively by helping the staff.

[shnozzola]

  Last week I stood across the road for several minutes before I could force myself into crossing and going in.  I know that in an hour I am going to see her again (I go every Tuesday in my lunchbreak) and am dreading it.  To the extent that I am thinking about homes further away rather than nearer so that I have an "excuse" not to visit as often.

She isn't my mother any more.  She still looks the same, but the person inside is someone I have no knowledge of or connection with - sometimes disturbingly so.

My heart goes out to you, man - you don't know how much.  Many of us are not far away from having our parents go through that.  My wife is a nurse at a retirement home.  She gets so angry at the pressure necessary by the home to move on to the next patient.  She sits in the room of an Amish lady right now with dementia when she has a minute.  At her stage of dementia, my wife and the woman "hunt" eggs together at the woman's farm.  As long as my wife "lives" with her patient in the past they can have a good converstion about all kinds of things - but the time given is really the most important.  It takes special caring nurses to do it.  I'm very proud of her.

[Traveler]

Whatever you do, or do not do, is ok. I agree with Chronos when he says that this affects the family, rather than the afflicted. Please try not to feel guilty. Everything you are feeling is common and natural for people who are going through this experience. When my father died, we all felt that he'd really died a long time ago. Its just that his body finally caught up to reality.

Do what you need to. Do what you want to. Remember her for who she was. And please don't feel guilty. Its ok, whatever you decide about visiting, and whatever feelings you're having about the experience.

Dementia sucks.

[Anfauglir]

Thank you all - you've all made me cry, but that's okay, its the right sort.  Thank you.

[nogodsforme]

We moved a bunch of stuff into Nana's new place last night. It is just one room but nice as far as that goes. Bright, airy, on the fourth floor with big windows looking out at the town. After we got her stuff in, she turned to me and said, "I will be sleeping here, but will still be spending most of my days with you all at the house." What? Why are we moving her, then?

I have vowed not to argue with her about anything, not even when she yelled at me for being lazy--after a week where I gave her an enema, helped her with her bath, drove her to the emergency room, woke up at 2am to fetch her back home, while teaching a full load of classes, driving a busy 15 year old around, coping with an overworked, stessed out husband and dealing with two dogs, one who eats poop and barfs it onto the carpet.

I am exhausted. 

[Zankuu]

Anf, I just stumbled across this thread. My condolences for your sister and father. And I can relate to the pain you're dealing with concerning your mom. My uncle on my father's side and grandmother from my mom's side both have Alzheimer's. My uncle is currently a stage 4-5 (I happen to work for the geriatric psychiatrist where he is seen). I'm uncertain where my grandmother is in the process but she isn't nearly as bad off.

And Anf, don't feel guilty and beat yourself up for not wanting to visit. It's completely normal and there are many healthy reasons to lower the frequency of visits, for both of you. My PM box is always open. I wish you the best.

[Quesi]

We moved a bunch of stuff into Nana's new place last night. It is just one room but nice as far as that goes. Bright, airy, on the fourth floor with big windows looking out at the town. After we got her stuff in, she turned to me and said, "I will be sleeping here, but will still be spending most of my days with you all at the house." What? Why are we moving her, then?

I have vowed not to argue with her about anything, not even when she yelled at me for being lazy--after a week where I gave her an enema, helped her with her bath, drove her to the emergency room, woke up at 2am to fetch her back home, while teaching a full load of classes, driving a busy 15 year old around, coping with an overworked, stessed out husband and dealing with two dogs, one who eats poop and barfs it onto the carpet.

I am exhausted. 

Get the rest that you need.  Let her settle in.  Visit.  Call.  Give yourself the time and space to heal up. 

[nogodsforme]

^^^Thanks. I am not at the breaking point yet.

I just got aggravated because the assisted living place she is moving into costs like 3000 a month, and she still wants to stay most of the day at our house? Why move, then? Just to give away money and then have us take care of her all day anyway? Who is going to drive her back and forth when she gets fed up with wherever she is at the time? Whatev.   

(She just yelled at me to put the towels into the dryer. I already hung them outside on the line, using my automatic environmentally green solar dryer. Let me go take my pills..... )

[Anfauglir]

This morning, I attended an assessment on my mother in her home.

She cries for her mummy and daddy, often for hours at a time.
When she gets upset or frustrated - which is often - she will shout at other residents, kick at doors, hit herself.
If she enters a room and turns the wrong way, she can end up staring at the wall and crying because she doesn't know how to get out of that situation.
She will stand at a door andscream and bang on it, because she cannot work out how to open it.
She hallucinates.
She is doubly incontinent.
She cannot communicate her needs, for the toilet, for food anddrink, nothing.

But her physical health is good - because she is in a good home, well cared for, she could well live for many, many years - with every day a misery of confusion and fear and sadness for her.

For those who haven't read the whole thread, this is a woman who all her life tried to be a good Christian, a primary schoolteacher, a cub instructor.

There are a number of reasons I do not believe in the Christian god.  This is the reason why I would spit in his eye and tell him to go to hell.

[EV]

For those who haven't read the whole thread, this is a woman who all her life tried to be a good Christian, a primary schoolteacher, a cub instructor.

There are a number of reasons I do not believe in the Christian god.  This is the reason why I would spit in his eye and tell him to go to hell.

Anfauglir, I really feel for you. To watch a parent go through that is incredibly saddening, disturbing and painful. Don't forget that we all stand behind you.

For what it's worth, I volunteered in a specialist care for mental degenerative illnesses such as Alzheimer's and Dementia in a rest home for two years. I used to bring my Viola in or my iPod and speakers to play Bach and other classical music to the residents. Music affects the brain differently to speech, and Dementia doesn't always affect the part of the brain that comprehends music.

Have you tried or thought about music therapy? You can practise it yourself, just bring in an mp3 player or walkman with anything you remember being some of her favourite music on it into the home, and try to play some to her.

I had some remarkable results, particularly one woman who according to staff, had not said a word or move of her own volition in a year, who upon hearing the music looked up, hummed along, then stood up. She looked directly at me and beamed from ear to ear, then said "Thank you". The nurses were absolutely shocked.

It could be worth a try, studies have shown it can reduce confusion, disorientation and aggression. Below is an example of its use, although not similar to your case.



Let me know if it's something you'd like to try, and if you do if it works at all. (The old man with the music is indeed an old Christian, and does talk about God at one point, thought I'd warn you)

[nogodsforme]

Yes, Anfauglir, it does not get better. And screw any god who does this to people.

Nana is still around, although slowly deteriorating. We took her car away a few months ago after a scary fender bender. She has become confused, paranoid and angry a lot of the time. She thinks the staff are out to get her, and makes lists of all the things the facility is doing wrong. She swears that a week goes by and nobody visits or cares for her.  (We see her every few days.) She loses her phone constantly, in one room, and can't keep track of what day it is.

She is in a diaper and pulls out her catheter. Her legs have sores but she won't let anyone take care of them (because the staff is out to get her). She has stopped eating, only drinking juice for the past week or two. She is also refusing all medication (because the staff is out to get her). That included the anti-anxiety pills that make it easier to deal with her. This could go on for months.

Sigh.

I don't want that kind of behavior to be how my family remembers me. Before I get to that point, waaay before I get to that point, I want a full gas tank, a closed garage and some cool music on the radio to play me out.

[Anfauglir]

She is also refusing all medication (because the staff is out to get her). That included the anti-anxiety pills that make it easier to deal with her. This could go on for months. 

Same with my mum.  About half the time she simply won't take them at all.  Other times she will accept them, but pouch in a cheek and spit them out afterwards.  Some medications can be crumbled, and the staff are very good at giving them to her in a jam sandwich, say, but there are many they can't.  It's a vicious circle.

I don't want that kind of behavior to be how my family remembers me. Before I get to that point, waaay before I get to that point, I want a full gas tank, a closed garage and some cool music on the radio to play me out.

Likewise.  I'm tending towards pills though, I think - something that I can do in my bed, something not too messy for those who come after.  Ideally, of course, I would want the option to have it done prefesionally in hospital so I have a chance to say a personal goodbye, then have a drip turned so I fall asleep and just never wake up.

Not for decades, I hope - but when I realise I'm getting to that point, I want to be able to make that decision myself before I go too far.

[nogodsforme]

I hear ya.

Yesterday Nana decided she wanted to be taken out to Friday lunch at dim sum, even though she is not eating anything. Well, my husband made the arrangements, then this morning at 7am she called and said she had changed her mind, she wanted to go to the big garden show downtown instead.

This was going to be way more complicated than just getting her to a nearby Chinese restaurant for an hour or two. The garden show is nearly an hour away and the trip would take up most of the day, plus getting a wheelchair for her, lots of pushing her around, her getting tired out and aggravated, dealing with the bathroom, etc.

I thought about who we were dealing with (having had more experience with crazy parents) and told my husband to make sure there really was a garden show before changing his work schedule around, etc. He checked online and found out that the garden show is in two weeks.

Dim sum it is!

BTW She is evidently taking at least some of her medications again-- the pain must have gotten too much and overcame the paranoia.