I would really like to scream!

I have been so busy this year, and haven't been around here much. But this is still the place I come to for comfort and sharing.

This has been a very tough year. Dennis (my partner) was officially diagnosed with MSA - a disease that will progress quickly and in a not very pretty way. He was hospitalized with pnuemonia in March. He had 2 surgeries in July and has been to the ER 6 times in 2009.

In May my father died suddenly (I am happy about the way he died, but not the death) leaving my mother, with alzheimer's disease living alone in a city 2 hours away.
Mother moved to an assisted living home in August near where I live. I sold my parents house and all of their belongings in September.

Today I got a call at work that my mother had been taken to the hospital because she fell and fractured her pelvic bone in several places. She will be in the hospital for a few days, until she feels comfortable walking.

My question is, how does one make peace with the health fairies? When is enough, really enough?

Anne, I agree with what you say. I am feeling sorry for myself right now because I really think I have been handed more than I can handle. And then I feel guilty because I am simply the carer and not the person sick.

You are right, also, that I need to take care of myself. I try, but I need to try harder in that area, too.

I'm with Anne in saying that I wish I had the words to comfort you right now. I think of my friend who has had a heart attack, got better, her dad and mom both diagnosed with terminal cancer, they died within two months of each other, she has car wreck (not her fault) and it tore her rotor cup into, she has surgery, gets home, and three days later falls out of bed breaks wrist in three places, husband has heart attack, both her limbs are in casts, can't feed herself, wash herself or even wipe herself, her job is threatening to fire her because of loss work time and none of it was foreseen or her fault...And all of this happens within 8 months time.

How do people put one foot in front of the other?

I love the saying that God doesn't give me more than He believes I can handled but why does he have to trust me so much?

I think sometimes we just have to sit quietly and say, "It is what it is." I would tell myself that when daddy was sick. Somehow that simple phrase got me through it.

Please know that we are here and holding you close. Come here anytime you want...say anything you want. We are listening and we all care.

Oh my JJ, how in the world did your friend deal with all of that?

I am feeling better today. Just putting it down to share with others helped me let go.

Today D and I have an appointment with a therapist. Hopefully this will help, too.

I've been saying the Serenity Prayer quite often lately. That helps me.

Anno, I'm so sorry you are going through all this. I so wish I was around to put hands on some of this stress. From a distance, know my heart is with you.

I'm glad you feel as though you can come here and vent. Sometimes getting things on paper/computer helps.

Regarding Mom, is there anyone else in your area that can help with visiting her?

Every hour, try taking a couple deep breaths. It's been helping me this week.

Stay well.

What a remarkable man Anno.
I believe part of my healing plan is to GUIDE my head not to think..worry or plan.That overload hurts.So I agree getting away is good.Today the shore an ice cream and looking at the sailboats.A walk round a very old graveyard and sensing the calm that ancient wisdom has left in a beautiful area.

Anno, the following are not my words. I chose this thought, in hope that it will help you at least a little.

Be Tolerant
You have the power to tolerate anyone and any situation. But tolerance is not just suffering in silence. It means going beyond any personal discomfort you may feel, and giving a gift to whom ever you would tolerate. Give your time, attention, understanding, compassion, care - all are gifts, which paradoxically, you also receive in the process of giving. And, as you do, you will experience your own self esteem and inner strength grow. In this way you can turn tolerance into strength.

Anno, I just want to add, that maybe ‘tolerant’ is not quite the right word. I just copied this the way I received it. I know how you love your Dennis and that you don’t need to tolerate him.
But I think when you are plain pumped out,...maybe it is the right attitude; just to keep you going. We can steer our lives only to a certain point. Illness and the hard knocks that can touch our lives, is simply beyond our control So what is left? I guess it is tolerance, afterall.

We think we have problems until we read those tribulations others are suffering through. I have to admit I feel sorry for myself and trapped but yet feel embarrassed as well for complaining when I have my health and could just ignore the disease living in my own home, my ex. This isn't anything to help you I know but just wanted to say I apologize for feeling sorry for myself when others have so much to handle. You will be rewarded in heaven for the person you are Anno. I would bet on that...

I knew if I came here and whined a bit I would end up feeling so much better. Wonderful.

Edelweiss, sometimes I do need to tolerate Dennis. Our relationship has changed so much, and loving aside, I have to tolerate his requests with generosity.

Dots, there is no one else here for Dennis or my Mother. His family - one sister - is out East, and while interested in his life, not really wanting to help out. My mother has a few friends now in the Assisted Living place, but all the rest of her friends live 100 miles away, in her home town.

Anne, that man sounds very strong and very at peace with his life. Blessings to him.

Chatty, there is no shame in wishing your ex wasn't living with you. After all he is an EX and he should be gone.

My mother is really confused right now. She was just starting to feel really comfortable in her new home - it's been two months now - and the routine of the day and week was suiting her fine. Now she is in the hospital and will have to go a transitional care unit until she can move back into her apartment. I think this will end up being a giant set back for her. Poor woman - lost a husband in May, sold her house, moved to a new city and a new apartment in August and now this.

Mountain, perhaps I should spend a few days with you. You seem to know how to find peace.

Anno, I experienced that with my mother too. Staying in the hospital completely disoriented her. I wonder why that is? She is still confused about it, and has told friends that she’s still in the hospital, although she is back at the senior home.

Maybe Alzheimer and dementation is a sort of protection, cushioning all the heartfelt changes in old age.

Frankly, I don’t know how you do it; work and caring for two loved ones. Really, all you can do is set your priorities.

I was amazed that you could still travel with Dennis like you did. But if the care he needs is around the clock, would you ever consider putting him in assisted living? Maybe even in the same complex where your mother is?

I know you once had a heart attack.
Dear Anno, the number one priority is YOU.

Anno, did your mom have signs of confusion before she went in the hospital? I recall Mom being in once and she became confused. They called it sundowning - I think. I'm thinking it will go away. Make sure she gets to see the light of day each day. That's so important. Sounds simple, but so many people in hospitals and care facilites don't even open the shade, and sunlight is so good for them. It also helps them separate their days from nights. How sad.

I can't bare the htought of you caring for your mom and Dennis all alone.

Tonight, when all the caring is finished for the day, sit back, relax, and have a glass of wine. Do some deep breathing and think happy thoughts. I pray you can do so.

Anno
all the small things...
Letting beauty and peace hit my brain via my eyes and ears...topping this up.some times its art others music .
most of all seeing the things than endure...landscape
the hills and esturary to the North sea..Today it was lunch..then a drive round Loch Leven..its a nature sanctuary so geese swans are all gathering.Then I saw a huge shire horse rolling on his back with joy..he was like a tank...
I dont watch violence on film...I have a ritual at bedtime when I read ..and whatever I have to cope with I know that moment with come and rest..

No one can be on duty or call all the time...Husband had an eye op two weeks ago..so return trips have been priority...so me being under the weather is part of the whole picture..
a wise friend now passed told me..."We work out our own salvation"
Our task is recognising what our salvation is..and for each it is different.

Yes, Dots, my mom was diagnosed with alzheimer's two years ago. She was just starting to get the routine at her new home when she fell. She was better today - I think it was partly the pain medications.

Mountain, I live in the state of 10,000 lakes. The city I live in was built on a river, like most early cities over here, and there are twelve lakes within the city limits. There are beautiful walkways, biking paths, parkways, and parks around all of them. And they are all connected by a creek that runs through them. They are beautiful, but unlike Scotland's Lochs, they are busy, busy, busy with cars.

Edel, I read where people with advanced Alz, tend not to get sick very easily. The simply forget that they may be sick, and get over illnesses easily. I often think about you are your Mother when we are going through this.

Every other Saturday, I treat myself to a day off (with Dennis), by paying a housekeeper to come in and clean our place. This morning, as Dennis and I were headed to the hospital to see Ma, we crossed paths. She told me that she was thinking of me yesterday and said a prayer for us. Isn't that nice?

A housecleaner would be a Godsend...more time for relationships.
You deserve to have this..and bet you are a good employer...

anno, this is an awful lot to handle. You must feel like you are being pulled in all sorts of different directions. Hold on to your self. Anno, I beg to differ trifling with where you placed your topic as "a very fine whine" your situation is much greater than that my dear, Lynn

Interesting. My mother was a diagnosed hypo chondria. Although it was annoying, I always felt sorry for her. There were other very serious illnesses with very evident symptoms. Her body was telling what her mind dared not. Now that she has Alzheimer's she does not complain of any ailments whatsoever. We can go outside in the shade in Arizona where it is 95 degrees, and my skin may be burning, and she does not notice. She does not notice the glare of the sun as we are driving, but I put on her sunglasses anyway so not to damage the retina. Also with the dementia, if you listen very carefully, you will hear her spill her secrets. I dread the day she falls because she is so frail, and she may not feel the pain.

Princess, and how are you doing? You have your own handfuls in life. You, too Anne and Mountain.

I am thankful for friends like you - and I wish all of our lives were easier.

I am transferring my mom from the hospital to a transitional care unit at the facility she has been living at for the past two months. I am so happy that I chose wisely, and that she can stay in the same building.

As I sat down, at almost noon, to write in here, I realized I hadn't eaten yet. I have gotten Dennis out of bed, fed (food and tube feeding), fed the cat, showered and dressed Dennis, visited my mother in the hospital for a few minutes, and moved some clothing from one floor to another at her transition unit. I must go an eat before I am off, once again, to pick her up and move her. Then groceries, walgreens, cooking.....

Ah, who will take care of me one of these days?

Wonder Anno
eating when "flight or fight" might hinder our basic drive so not having food sometimes may be a tactic the brain uses...not to be recommended long term..
I put my caring needs first for a long period of time..then a pattern emerged when things settles somewhat.and then repeated as you know..and so on
Of course the thought of how we gain space time and our own way is so heartbreaking that we are yet still driven.

What about a smoothie already in a flask so you nutrients are taken

Anne, there are bowls of "word salad" Yes, Mom has been very combative. The worst was after her surgery 2.5 years ago to explore the extend of her cancer. The anesthesia caused all kinds of brain mush. She'd look at her husband of 50 years, recognize his face, and say, "I don't want YOU. I want the other Brian!" And she did tell me to get out. 6 months later, her dementia was violent, and she was put on a strong med. She was knocking on neighbors' doors telling them to get the kids off the roof or she would call the police. Or she'd try to hit my step father on the head with the phone if he tried to take it away from her. The top of her head barely reaches his torso. You have to have the leisure of "down town" to decipher the word salad. And a note pad. It's kind of like doing a cross-word puzzle. Anne, you must have highly honed coping skills and mountains of love in your heart.

Wishing all of you strength so far, since all of you are looking after a frail senior.

Share with us what you learn over time Anne in your job..

Dear Anno, you have had a seriously stressful year and you are in my prayers.

I agree with Anne. We don't always get what we deserve nor do people always get what they can handle. If that were true, why are there so many suicides?

After my father passed, I made calls to his friends and one woman said her husband had Alzheimers and he was so stress free and happy she was a little jealous.

It's crazy - living with Alzheimers and not knowing or knowing and suffering. I know there are people who have happy, blessed lives, "it's all good," and then the bottom falls out like JJ's friend. However did she manage, JJ?

I've had some difficult years lately and I understand less and less all the time. I send blessings and prayers.

Thanks, Saundra

Would you believe that on Monday, 15 minutes after arriving at work, I got a call that my Mother was in the hospital again? They were screaming seizure, but, it turns out she was dehydrated and passed out while using the bathroom. The transitional care unit completely over reacted.

How much of this type of over reaction can be attributed to suing everyone for anything and everything. She no more needed a doctor than someone who sneezes while sniffing the perfume they are allergic too. No wonder our insurance payments are out of wack.

I was recently admitted into the hospital for two days and nights for pneumonia. I was not in intensive care just a nice room and the entire bill came to $22,455.68. They did take a chest xray before letting me go home and a sonogram of my chest, while I lay in bed, but all I had was one IV when I arrived and then took two pills during each day. Thats it!!!! Now how does that come to that kind of money? If that isn't plain and simple GRAFT, then what is. Thank God for Medicare, and all I ended up paying out of pocket was $200.00...

We must do something about health care costs. Yes, you only ended up paying two hundred, but others end up paying the whole price.


Everything costs way too much money. It is rediculous. (I wish I could spell).

Anno, I'm suffering through eldercare with you. I feel badly saying that because our parents are the ones suffering the most, but we are suffering mentally, at least I am.

Got a call in the middle of the night. My FIL fell out of bed and cut his head on the bedside table. We took him to the hospital at 3:30 AM yesterday. They would have taken him alone in an ambulance, but who wants to do that to their parents. He needed 20 stitches. You should see his bandaged head. So sad. Oh, this is the second set of stitched to his head in a month, or maybe five weeks. The other time I met him at the ER because they had already called 911 before calling us. It was 6:45 AM and Ross was already at work. He sees his first patient at 7:00/7:15. So I went and helped him get through the process of stitches and CT scan. Then drove him back. That time he fell in the activity room and they found him lying on the floor bleeding, sound asleep. And this is what we thought was the best Alzheimer's assisted care facility in the area.

And you know he has Alzheimer's and is very confused. However, on the ride back to his care facility, out of the blue, he said, "This is a complicated way to live." Go figure. And 90% of the time, he doesn't know what he's talking about.

Anno. I've learned that urinary tract infections, lack of potassium, and dehydration can do wacky things to the elderly. How's Mom?

chatty, I'm glad you have Medicare!

I just got old enough to get Medicare but until now I also paid full price out of my own pocket. Like last time I was in the hospital, only 9 hours on a hard gurnee in the emergency room, just lying there due to severe constipation. Got one shot, did my thing and went home to the tune of $11,097.00...and that ain't whisteling Dixie. I had to pay every dime of it out of pocket. So YES, I am happy to finally have Medicare with supplemental Insurance as well. I earned it all these years.

Dotsie, my mom is in one of the best around, too. Sometimes I think I should move her into one of the small condos left in my building and hire 24 hour care. We wouldn't be paying so much more for that then we are right now.

When all this is done, with Dennis and Mom, I am going to become an advocate for nuerological disorder studies and funding.

Chatty, that is outrageous! I am happy to learn that you won't have to pay anthing like that again.

chatty, glad you've made it to the other side of the health care system.

Anno, we tried the 24 hour home care and it didn't work. One gal stole his wallet, but we couldn't prove it. Funny how she never came back to work a day after that. Also, what do you do when they call and are running late and the person there has to leave?

It's a mess.

By LAW they have to give you your vacation or ask if maybe you'd take the money instead abaut it is up to the employee. Don't let them make you responsible for something thats their problem.

Anne, we reposrted it to the person who recommended that agency to us, just so they wouldn't recommend the agancy to anyone else. That's all we did. During that time we were realizing that the 24 hour care was not the best way to go because my FIL didn't want all the strangers in his home caring for him.

Advocate for yourself. Get that vacation. I imagine soem of the problem is people get use to their caregiver and don't want to have to get adjusted to another person.

Anne, gosh, I wish you could find another job!

Anne,I think I mentioned this once before,...but maybe I just thought it...

I would think there are many well to do people looking for one care giver to care for their old parent/ parents. They may even provide a car, transportations costs, and give you a good salary.

Anne, we have only hired privately for our care givers. While we don't give them any insurance benefits, we do treat them with utmost respect and give one paid week a year. Also, it allows lots of flexibility for the gals.

I don't know what you are getting paid, but when we looked into agencies, we found out that we would be paying double, but the caregiver was actually only getting half of that money. I figured we might as well go the direct route.

We have hired through barefootstudent and craigslist, but there are many others out there too, that let you either run and ad or answer to an ad.

Good luck. You deserve so much more.

Anne, I looked all over for someone who would come in full time to care for my sister and couldn't find anyone, and I was paying $12.00 per hour plus 3 delicious meals I cooked myself. I bet there are many people with someone in house that needs constant care. Why not advertise? Use a friends number so the agency doesn't get wind of your looking.

Anno, we hired through an agency, paid the money, and had someone steal from us. As I guess you've learned, there are still no guarantees with an agency.

chattu, your three meals could be the selling card. People totally appreciate being fed. That's another savings for them.

Well, it sounds like you are damned if you do, and damned if you don't.

Anne, have you thought of working for the VA?