I'll try to make it quick, but at 46 and living with my grandmother 38 yrs out of 46 has been very wonderful for me. My grandmother and grandfather rasied me. GM is 93 and has only been on 2 pills most of her life. A waterpill and high blood pressure pill.

Damit, she got hammered with a stroke Oct 2nd. and can't walk but can move everything yet can't swallow like she could. She was sent back to the hospital overnight where I stayed with her til 4am and since 11am Monday. She also can talk ok but her voice has gone softer in the last week and she has not been out of bed into a wheel chair in 2 weeks.

Today, the doctor who saw GM after her stroke was the same doctor and explained that her kidneys have gotten a bit worse now yet he said she could go on for months in her current condition maybe more. They are trying to get the fluid out of her legs and sometimes has a tad bit of an infection in one of her lungs but it's always cleared up.

We both know she is in god's hands as a Christian and either God heals her or her time will be up and something will eventually do her in. Me and grandma know she got hit bad and we can also joke sometimes just to be realistic about things as I've asked her if she felt she was a (cooked goose) and she nodded her head saying yes quietly. Nan, I love you very much. Living life is going to be difficult for me without you. I'm going back to the hospital to see you. I know I'll be happy again. I just hope the pain is not greater than what I could expect. I guess to all of those who've gone through this might know how I'm feeling. She was not just a grandmother too me. She was my life basically. I guess I'm nearing my turn or time now. I don't think God is going to allow her to suffer very hard. She's given herself to others her entire life.

Vera, thank you, I am so pleased to see you stand your ground when you believe in something.That has been your strong attribute all along.I knew you still had the fire in you.

Oh, the comfort, the inexpressible comfort of feeling safe with a person, having neither to weigh thoughts nor measure words, but pouring them all out, just as they are, chaff and grain together, certain that a faithful hand will take and sift them, keeping what is worth keeping, and with a breath of kindness blowing the rest away.

Jumping through hoops to get what we want. Talk about an oxymoron. If it works, why not?

There is always a price tag attached to everything. The hard part is figuring out when the price paid surpasses our expectations. Is any NH good enough? no. Is the one that your Mother was in good enough? NO. Is the one that my MIL in good enough? Trick question. It has to be good enough because I no other choice. Ask me when this is over and you will get a very different answer. I have to believe that Mom is receiving adequate care, doubting something that I cannot change is not an option.

Corporations, healthcare and government do not mix. The first wants a profit, the second wants an even bigger profit and the third is controlled by the other two. Jumping through hoops is how our government works. It's dependant on big business and will jump through as many hoops as comanded just to get that campaign contribution.

Maybe you will always be able to care for your husband at home. I hope that is truth, but, if there is no longer a you, the point is moot. You do not have the disease, do not die because of it. The common bond CG's share is survival from a disease that will claim a LO. We must go on. What we learn thoughout this experience will be valuable for the next generation of CG's.

Think of that ant moving all those rubber tree plants. If he didn't have that unrealistic self fufilling prophecy would the song even exist? High hopes will go further than no hope. Oops Just have to believe in something, without it, there is no hope.

The ant did it and would do it over again. Just because he can. No oops about it. You made the right choice, because there was no other choice. There is no going back and doing it again.
May the frog have mercy on my soul.
Power to the puppets and peace to all people.

[This message was edited by veeerrraaa on December 07, 2003 at 08:03 PM.]

Vera, I would never label you as such.I recall you from your first days on the forum.You were always so passionate about caring for mom.Like this young man you were being broad sided with so many isues.No one to appreciate the love and care you offered.But that did not sto you from doing what you felt was right.You continue to have that same sense of right and wrong.Unfortunately, no ever one is cut from the same loving cloth.I still sense that same feeling of flustration.But is should never be toward your self.You did what you did out of love and concern.All the human elements that make you who you are. I believe we all enter these facilities with a sense and attitude of kindness.Thinking they are caring for our love ones as we were led to believe.When you visit and you see a person being treated like they did not matter anger is going to be your first reaction.Then you start to wonder what have you done to this person .This man is experiencing everything aspect of his life out of control.He has done everything his thought was right and he keeps getting smack in the face.We give this people the disticnt title of being professionals who are able to care for a person.What a wonerful peace of mind that brings.The , bam, they lied through their teeth.Within these facilites the day and night crew cannot work together.Why, beause the night crew has a reputation for being lazy but make more money.I had 2 aides that were wonderful.They told me mother was so fortunate that mother had so many that cared and voiced their concerns.She said there were others that had no one and they were left to the mercy of the facility.So this is not just about you, me , it is about those that have no voice.Just imagine what they must endure.They have no one to grease the palms.My mother had good care when 2 aides were on her floor.When they had duty on a nother floor things went to hell.We were kind to everyone.But some do no respond to kindness because they feel no connection to the patient.They come to work and are ready to leave.When I went to visit mother one afternoon she was still in bed.I called the aid and told him, nicely, that I wanted her up and dressed.He told me the nurse had told him to leave her until the night crew came on.I old him I want her up and dressed so I could take her outside.Thsi aide got fired because the nurse did not like the fact that he shared with me , her orders.I told the staff things over and over.The nurses give the orders, wth no concern for he person.These aides told me that no one listens to them and they know the person better than anyone..We cannot keep waiting for somone else to try to make changes.We give them kindness and they want cavaier.There are so many conflicts with in the facility that it is felt by the loved one.Are we saying that we are going to have to jump through hoopes to get quality care?Once they know you are spreading kindness they begin to manipulate.They will acknowledge the loved one in your presence to get a reward.So what happens to those who are at their mercy.Do we say someone else will have to solve their problem.There are some wonderful people in these places but they re out numbered.The stress of seeing others not carring out good care is as stressful as doing it them selves.Is there always to be a price tag on giving good care?Do we settle for half a loaf when we want a full loaf?There is a pilosophy for caregiving by the name of Eden.Guess what?You have to have mucho money to afford it.What does that tell the average person.You only matter if you have plenty of money.Dear god, I hope this is not so.I have watched these people cry with sadness and boredom.Sit around a dingy nursing station with no one acknowledging them, unless a family member is present.When we have other issues that concern us we stand up and be counted.Why are we waiting for others to make a change in a system that will affect so many humans and possibly our selves.These are humans that have served their counrty and community the best they were able.They were the ones who paved the roads for the things we all enjoy.They deserved to be treated with dignity and kindness.I will never believe that is asking to much.It is suppose to be a natural and human feeling.Have we raised robuts?A SPOON FOR A SUGAR DOES GO A LONG WAY.Too much sugar is not alway the way to go.None of us knos when we may have to place loved one or be placed.Take the fear out of the idea by changing what goes on behind those walls.Maybe they need to teach these who work at these places the difference between being a bad person and doing a bad job.I have 2 people I care for.I am 62 years old.My husband is showing signs of great deteration.Do you think, after my experence, I will turn him over to one of these facilities? I have dealt with hospitals and doctors and facilities for the past year.Mouth wash does not take the bad taste left in my mouth.It is flustrating to know our hands are tied .We have to make our voices be hear to free our hands.You have done so much and this is not about you.We all know you have been through hell and back. We each have.I just cannot allow this to be the norm for others.I believe in this so strongly.

Oh, the comfort, the inexpressible comfort of feeling safe with a person, having neither to weigh thoughts nor measure words, but pouring them all out, just as they are, chaff and grain together, certain that a faithful hand will take and sift them, keeping what is worth keeping, and with a breath of kindness blowing the rest away.

But being angry at something that is not within your control will not help the situation. His GM is still in the NH. Energy is being wasted being angry. The same energy that could be used working with the NH to better the care. It doesn't mean you agree or like what is going on. It's more like placing priorities on what can be changed. What is more important? Taking care of the LO or being angry? Which is more productive? Which memory will you want to look back on?

I am all to aware of what is going on in NH's. I would rather have the staff as an ally than an enemy. That is the only choice I see at this point. Think small; what can I do to make today a good day for Mom? Maybe it's a defeatist attitude but it's to overwhelming to worry about things that I cannot change. I have neither the time nor the energy to buck the system that is in place. Maybe someday but not today. My limits I know all to well.

Killing them with kindness will not solve the big problem, yes I agree. But why not start within your own heart and take it from there. Good things grow and multiply, bad things sit and smell forever.

Just one opinion that has no real clue but has tried it both ways. I couldn't sleep with the b!tch that I was. I like the kinder me.

May the frog have mercy on my soul.
Power to the puppets and peace to all people.

Vera, the conditions she is talking about have nothing to do with kindness.You can be kind but the ones holding the purse strings make the final call.So we continued to be black mailed to get quality care.She is trying to give all she has to her grandmother.Has outside forces to deal with.This nonsense has to be addressed on a higher level.These people start to expect you to kis their you know what to get good care.There are more than just money issues that ome to play.Some of these people in these places are lazy low lifes who have jumped from on facility to another with no screening.The ones that really want to do their job are sworn by the code of silence for fear of being fired.The ones who give this facilities the green light need to be held more accountable.The only way is to be there 24/7.It is a well known fact that when the cats away the mouse will play.I see no excuse for neglect , none. I have contacted agencies and told them that is they are to represent those in the facilities they need more thanlip service.Many of the nurses are in these places because they cannot get jobs else where.They do very little to earn their pay.The aides become their peons.I had an aide that told me there was only one good nurse in the place.This has been affirmed by someone outside the facility.People are stressed out, they are crying for help.They are told a facility is their answer.Where do they draw the strength to cater to these so called professionals.I know of those that have worked in most of the facilites in our area.Some very exclusive.They say you had better be prepared to be there all the time and look at the total picture.Also keep one ear to the conflicts going on while you are there.It is a joke.It is about money and profit at the expense of our loved ones.You can bake cookies, make a full course meal but it makes no difference. I was always intuned to what the total picture was and also made friends with one person that was not suffering from dementia.The word of mouth is the best information. Those that work in thee places are a reflection of our society.Some good, some bad.The bad out number.Ask anyone who has worked in these places and they will give you the scoop.They blew the whistle when their job became too much emotionaly.Many of the aides do not get proper training.They are never at one place long enough.It is a disgrace what is allowed to go on in the name of love.I think anyone who allows this code of silence to guide their conscience sould hold their head in shame.Go to confession every night.Sorry, but I have seen it all and have learned even more. To have to be black mailed to give quality of care is sinful.If I am gong to be nice than you earn my respect by doing your job.To get kindness you have to give.This is a very passionate subjec for me.It is a secret that is swept under the rug.When you place a loved one you have got to educate your self to the entire architecture of the bldg.Do they have sprinklers, generators.Do they maintain an emergeny crew.The list goes on and on. Visit the kitchen , the laundry room.the cleaning staff.This is what is involved in a good run facility. These people who run these places have degrees in business, not compassion.

Oh, the comfort, the inexpressible comfort of feeling safe with a person, having neither to weigh thoughts nor measure words, but pouring them all out, just as they are, chaff and grain together, certain that a faithful hand will take and sift them, keeping what is worth keeping, and with a breath of kindness blowing the rest away.

"Kill them with Kindness......."

Often times at NH, the staff is over-worked, under-paid and un-appreciated. Do they like any of it? no. Can they change it? no. Can you change it? yes. A little kindness; a few kind words or a smile from you will turn the nastiest into a ally. Kindness is one of those intangible things that is never rejected, often times overlooked, but always welcome.

May the frog have mercy on my soul.
Power to the puppets and peace to all people.

Luv my grandma, first we will be happy to move your post to another topic. Second, I experienced the lack of care, etc.in a NH.Contact the state abudsman and the dept that inspects and issues this facilities license.Have a complete list of all the infractions.Have duplicate copies.Make sure they get every word you say correct.Insist they go into this place immediately with no warning.You also have to remember the state makes money from these license.Neglect is what contributed to my mothers death along with a half cocked doctor who puts no value on the elderly.I hope , one day, there will be funding to have care at home.Make these momey suckers sing for their supper.Honey I know how you feel.It is so flustrating to see the lack of care and concern for our loved ones.If you are able take some picturs.These places clean up their act when they know someone is unhappy.They doctor the records , clean the joint, bring in extra help. They did this to me but they can never change what I know to be the true facts.When I hear your anger and rage it sunds so much like me.And justified.The code of silence in these places prevails.No one takes a stand but they will take a stand against the ten commandments being removed from a bldg. I would like to see the commandments posted on all care facilities along with the oath the doctors took.It is disgraceful what these places are getting away with.I am no finished with the one mother was in.I have seen the health dept be so picky on a business and allow these places slide by.Ask the health dept what type of liscense they were issued after inspections.Ask for all the infractions they have been sited in the past 4 years.I went over the heads of the local health dept.I went to the state.I got better information. They may try to intimidate you, you know whay to do.You have spunk and they see that as a treat.They love to deal with someone who believes every word they say. I told quite a few to take their lies and shove them. I am so sorry you are having to deal with this along with so much else.This seems to be the way things happen with caregiving, especially when we have family that give nothing and will take it all.You hang in there.Your love and devotion to granmother will be your strength.

Oh, the comfort, the inexpressible comfort of feeling safe with a person, having neither to weigh thoughts nor measure words, but pouring them all out, just as they are, chaff and grain together, certain that a faithful hand will take and sift them, keeping what is worth keeping, and with a breath of kindness blowing the rest away.

maybe we should end this thread since I still have GM. sorry for missplace kind of.

hi, GM still with me. She's confused but answer's questions. I'm trying to get her out of this nursing home because I can't stand the room she's in. 4 to a room and the rooms are pathetic. I did have her in a real nice place but I didn't get along with that place and they ended up shipping my GM without a 7 day bed hold to the hospital. I was furious and she went from a rolls Royce room to a 69 volkswagon.

I had to get housekeeping in the day she arrived. My and her doctor will try to get her back to our hometown. Oh God, if we do, this would be the 3rd move in less than 3 months. Not counting the 2nd trip to the hosptial. One for blood, the other to ship her out for shortness of breath to get rid of me also.

Had some run in's with the rude russian staff and other runts who think their it! I could have handled it different but basically told a few of the hyarchy off because they bitched about me sleeping with GM even though she was the only person in the room. I told them off and I wasnt' soft in doing it. Then they started piling the crap on. I met others who can't stand that director of nursing. I just hope GM can hold up. I feel bad for her now in the new home but in the 5 weeks she was at the other place she contacted nehmonia 3 times.

I found they were being sloppy with her by putting on a pair of pants that could have cut through her skin. I yelled at them for doing such a stupid thing. I'm filing a complaint this week. They didn't even know how to work the feeding tube and when I came to the room found GM's pants soaking with fluids.

I'm the one who had to get her tongue cleaned up. They forgot to take out her dentures and I raised holy hell in the morning how I found GM lower dentures hanging in her mouth. So, since I bitched enough with good cause, they made it harder on GM. They are lucky I don't go down there and take a baseball bat and beat the living ---- out of them but that would not do me any good.

I talked with GMa's doctor friday about hospice. It's no fun for GM in bed. We talk, and we enjoy each other's company. Yet she has lost much of her strength and does not talk as strong as she did after her first 3 weeks into rehab. Maybe they gave her a dang flu shot. I don't trust the govt. for any of these shots. We don't know where the hell they come from and we just need to wash our hands and think. Many colds or flue can be avoided by keeping our hands washed regularly.

Because I have recently experienced what you are going through my prayers are with you.Nothing prepares you for the loss of someone that you love so much. She must be a very special grand ma. I hope things are looking better for her today.I also was close to my grandmother.I lived with her all my life.I use to call her mom.She treated me wih the same love and confidence that mother did. Se had so little but she had so much.Money very little, but character was abundance.I rememeber the things she did with me more than the things she could not afford to buy me.She never complained about the things she never had.Always was content with a simple life.She was a lady for sure.When I lok back I see that I always has her tere when I got home from school.My mother worked but I never came home to an empty house.She was not over strict, but when you were not in the house at the given time she came looking for you.She had certain expectations and nothing changed her mind.She was a excellent role model for me.I alwas knew there would be consequences for my actions, either from her or my mother.She was more sure of her ideas than mother so mother gave her free rein over me. She smacked me once.Se was behind me and I said a bad word.All of a sudden this hand came from behind me and wacked me in the mouth.I got the message.Not because she hit me hard but she did not use fowl language and would not tolerate it.She would say you sound like a man when you say nasty words.SHE WAS ALWAYS THERE FOR ME AND MY MOTHER AND IN THE END M MOTHER WAS THERE TO CARE FOR HER UNTIL SHE PASSED AWAY.My mother missed her so much.They had a special relationship.One because my mother was the baby, 2 because my father left my mother with 2 toddlers and 3 my mother was so kind and respectful of her mother.Sadly this special love was not given by all the children. I never realized until now what an impact she had on my life.She protected me from running a muck, at a young age.

Oh, the comfort, the inexpressible comfort of feeling safe with a person, having neither to weigh thoughts nor measure words, but pouring them all out, just as they are, chaff and grain together, certain that a faithful hand will take and sift them, keeping what is worth keeping, and with a breath of kindness blowing the rest away.

quote:

---

Originally posted by may:
Moments in Life ... Don't count the years-count the memories. Life is not measured by the number of breaths we take; but by the moments that take our breath away!

---

So true, Edna Mae, so very true.


Luv my grandma...just wondering, how are things going for you and your dear grandma?


To those, too numerous to mention, wishing you and your loved one's the best life has to offer, today and every day.

Bye for now... ...Joan Marie

"Dream as though you will live forever. Love as though you will die tomorrow."

Moments in Life
There are moments in life when you miss someone so much that you just want to pick them from your dreams and hug them for real!
When the door of happiness closes, another opens; but often times we look so long at the
closed door that we don't see the one,
which has been opened for us.
Don't go for looks; they can deceive.
Don't go for wealth; even that fades away. Go for someone who makes you smile,
because it takes only a smile to
make a dark day seem bright.
Find the one that makes your heart smile. Dream what you want to dream;
go where you want to go;
be what you want to be,
because you have only one life
and one chance to do all the things
you want to do.
May you have enough happiness to make you sweet, enough trials to make you strong,
enough sorrow to keep you human and
enough hope to make you happy.
�
The happiest of people don't necessarily have the best of everything;
they just make the most of
everything that comes along their way.
The brightest future will always
be based on a forgotten past;
you can't go forward in life until
you let go of your past failures and heartaches. When you were born, you were crying
and everyone around you was smiling.
Live your life so at the end,
you're the one who is smiling and everyone around you is crying.
Please send this message to those people who mean something to you (I JUST DID);
to those who have touched your life in one way or another; to those who make you smile when you really need it; to those who make you see the
brighter side of things when you are really down; to those whose friendship you appreciate; to those who are so meaningful in your life. Don't count the years-count the memories........... Life is not measured by the number of breaths we take; but by the moments that take our breath away!

Oh, the comfort, the inexpressible comfort of feeling safe with a person, having neither to weigh thoughts nor measure words, but pouring them all out, just as they are, chaff and grain together, certain that a faithful hand will take and sift them, keeping what is worth keeping, and with a breath of kindness blowing the rest away.

Hospice will be a good one to look to even if you decide not to bring your grandma home. If you do bring her home they can help you get the proper equipment and supllies you need to care for her. I had them when Milly reached the end stages of AD and they sent aides to help bahing and give me a short break. The nurse also came weekly untill the end and then she came more often till Milly's passing. They have many more services and assistance that can help you and your grandma make her last days better.

Edyth Ann aka Bubblehead aka Queen Bubble
AOL IM EdythAnn12
edythann@netzero.net

quote:

---

Originally posted by luv my grandma: ...
Lastly, she wants to come home to her bed and probably want to go that way but I'll have to check into her insurance and or medi-cal if we can bring equipment home but nursing care would have to be here most of the time. ...

---

As you and your grandmother continue the journey, please consider use of Palliative Care and/or Hospice. Based on her doctor's orders, both services are covered by insurance and can be utilized at hospital and at home. These services will keep your grandmother comfortable and ease your caregiving burden.

I can understand you wanting to be present when the time comes for your grandmother to pass but please know that many times, despite how long you may wait, that the majority will actually expire the very moment you step out of the room.

In the meantime, just keep talking with her, keep nurturing her as well as yourself. It was so touching to read how you met her request for coffee in bed. Don't stop.

Wishing both of you comfort...Joan Marie

"Dream as though you will live forever. Love as though you will die tomorrow."

Wow, I'm sorry May. I'll lift you in prayer as well. Here's also hoping your love and strength will carry on just because of her.

The thing I wonder about most in my situation is I'm wondering what is going through her mind. Does she feel her time is short. Maybe her body is telling her it can't go on much more. She's happy, yet very quiet. I think I have a decent idea what she's going through for I've lived with her and know her actions.

sometimes she's confused but it hurts me very much when I think of what is she thinking? Does she think she will soon leave me? Does she think of her life as it comes to her mind? She's always saying she wants coffee in bed ; ) but I just give her a taste with one of the pink spounge stick. I just hope God does not take her when I'm home sleeping. I want to be there.

Lastly, she wants to come home to her bed and probably want to go that way but I'll have to check into her insurance and or medi-cal if we can bring equipment home but nursing care would have to be here most of the time.

Some day we'll be with each other forever and that brings the most comfort. I hope I make it

luv my grandma,

quote:

---

I just hope the pain is not greater than what I could expect.

---

I remember saying practically the same thing. I had spent the last 15 years preparing to be a widow and thought I was as ready as I could be. But when my husband died, I can tell you there was no way I could have prepared for the finality of that death. The void left was black, bottomless. His spirit went someplace that I could not follow, and I was desolate in this aloneness.

But human beings are very resilent.The mind tells us to move on, even as our grief keeps pulling us down. Go through the rituals of burial. Each day, be sure to eat and drink properly and get enough rest. Eventually, the darkness lifts and one begins to look around at opportunities for a new life without the loved one. It may involve finally being able to move to another place; to travel; to do lots of little things that weren't possible when caregiving consumed so much of our time. The one constant is that the good memories of our loved one remain with us and that will be a huge comfort.

I am so sorry your grandma is ill.She sounds like a fabulous lady.We will pray for her and for you.Do not under estimate her strenth to pull through. I know the pain you are feeling as I lost my mother on Oct 18th.Your love for her shines through like the brightest star.

Oh, the comfort, the inexpressible comfort of feeling safe with a person, having neither to weigh thoughts nor measure words, but pouring them all out, just as they are, chaff and grain together, certain that a faithful hand will take and sift them, keeping what is worth keeping, and with a breath of kindness blowing the rest away.