The Caregiver & Dysfunctional Families: How are you doing?

The hospital has a cafeteria, snack bar and a visitor's restaurant. Restaurant isn't bad. Snack bar grill doesn't have many healthy selections, but is good for a cheeseburger or tuna melt. The cafeteria tastes like leftovers from restricted diet patient trays. Jay and I go get Pam's meals if she asks for something. I don't think at this point she needs a fat-free, salt-free diet. Jay went to local drug store and got her a vanilla milkshake this afternoon. Sue arrived mid afternoon. When I stopped in this afternoon she and Pam were conspiring about something. We could have an episode of "Nurses Behaving Badly" in the making. Or perhaps they are going to play matchmaker on Jay's behalf. I've got one more appointment and then I can go to dinner.

Don't know what the reason is CM, probably cost and ease of preparation. Don't know what their excuse was for the cream of mushroom soup that tasted like wallpaper paste.
I think I would take the Salmonella over MERSA

Is it an anti-salmonella thing for the wards, do you think, Veronica? Powdered eggs being sterilised and all that?

I will now have to go and wash my mouth out. You've taken my memory straight back to the 1978/9 Winter of Discontent and school breakfasts - groooo!!!

I know what the eggs are like, they make them from powdered eggs. the thing that amased me was that in the cafeteria the food was just fine with a good choice and it was prepared in the same kitchen!!!!!!!!

Thanks everyone for the support. I came to the hospital early today. I knew it might be a bad one for Pam. Her mom died 2 years ago today. They were exceptionally close. We were talking about all the time we spent sitting together with her mom at the end. She was so sweet and cooperative. My mom used to get furious that I spent so much time with my aunt. Pam said she couldn't have imagined sitting with my mom with the way she acted all the time. The Food Service just brought in Pam's breakfast tray. The food looked so bad. Scrambled eggs that looked like they were cooked yesterday. Yuk! I called and ordered a breakfast from the visitor's restaurant - told the lady it was for Jay. He's seems to have charmed the women in that area. He's still here so he can smile and work his magic. Today is my killer work day. Three classes at the U and six one hour office appointments. Getting all of the court ordered DUI's from Christmas and New Year's in for their 8 sessions of alcohol education classes. Everyone have a good day!

Becky
glad Pam is coping and may just be able to enjoy her friend's company a bit

Booklvr, I used to be an ardent reader until I found showb$x and started watching all the tv series and movies. I could spend all day and night rapped in a book. Now the sb is my downtime. Thank you for the suggestion. If I can just get this therapy thing going. I still have not heard anything I think the therapist is still out sick. My friend says her son caught this flu thing and lost 25 pounds he in his e 50's. I also apprciate about the pictures. I am not on line in the house and yes I lock my room every time I step out. She had been known to enter Even make comments. That was one time I thought she was out to work. There is only one piture left up of me my mother and my son. Then graduation hs pictures. I so apprectiate your advise. Earlier I might have done that now I really dont even care, I have pictures in my room. And you are righrt about the computer and all. I just try to avoid her by the time she gets in I am done with cooking and cleaning usually at laundry or out and when I get in I very seldom see her. When I do I feel as if there is a slithering snake around. Its funny if my mother is in kitchen with me she very seldom will come back there. The kitchen table is wobbly about to fall. there was a time I would get under there and work on it or tell my nephew to see about it. I am the only one who seems to notice it. I kind of stabablize it then my mother who is like a 3yearold on steroids moves it again. It should hold out until I get another one. I get out every now and then meet with friends not much of a social life I used to go sit out with a friend around the corner. and visit with the one on block. Maybe when weather breaks. Sometimes I wish I had one of those crazy husbands people complain about and its so cute. But really I have been a sought of loner all my life when I had a car I would be gone off in a miniute. I ldont have that luxury anymore. but I am good. I think. Time will tell. I really appreciate the input. I have allowed myself to be hindered career wise and other ways. One time it was oh you think you this or that or better than everybody. It would shock me because my whole motivetation would be aobut them. So yes I appreciate the post about how the family sets us in roles. Well I am pretty drained. and trust , every word of advice I get is food for thought and I think about things for a long time and apply them elsewhere sometimes so I appreciate. My hobby is going to be my room. I just cant seem to get it organzied or even care sometimes. It refects my mind and emotional status. I do beleive. I mean as a child my room would look like a hurricane and my father would just say clean this mess for want of a better word. Now my place before I moved back here, I dont even feel like its home, was lovely. You know I just cared, I swept and mopped most days before I went to work, before I got sick. My mother only came because my "Aunt" jean used to come by, she went with me when I first got it. and naturarly when I had to move my mother would not let me bring my furniture. So I really need to buy a dresser and things. I have a small table, mantel piece boutght down a cresser chest I had left upstairs but the drawers are shallow Ican go on and on . I keep saying if I unclutter I will feel better. Sometimes that lil bit at a time sticks in my head.

Becky glad pam is holding up and has a good attitude. being fit definitely would help her. I am glad too that you are going for therapy - can't hurt. I hope it relieves some pain. Sounds like an excellent trip for you and pj. If you are going through Edmonton and want to connect just let me know. That trip should take in a lot of great Canadian scenery..

sharyn - take care -sounds like you are doing the right things for a cold. Hope you feel lots better tomorrow.

duck (((((hugs))))) love goes a long way  - you received it and you passed it on and that is what it is all about. Prayer helps me a lot too.

bedtime here...

Becky the love and support and honesty between you all is so wonderful. Its sad but it so real and beautiful. God Bless you all. I really admire your strength, honestly, that hospital routine no matter how close is draining in every aspect and then you have chronic pain ant other things going on. I wish you all the best and peace and strength.

Hi all. I have been off line for a while and then thought I would catch up on the whine forum. Still got to catch up here also. Miss you guys. Missed the guys there. Was nice. I did a lot of whining and crying over there. That was my first stop and I got so much help and feed back.

Sometimes I wonder if people really know the efffect their words and advice have on others. I am talking about the good effects. My life, my heart and my motivation has been altered in a postive manner just from words shared or spoken. I think its awesome and that is why I appreciate certain people in this forum. They are about honesty and truth, I am so moved by some of things that are shared. Even the bad , and the sad. Seeing other peoples strentgh gives strength.

One day I was down and out. I mean really sad and broken. I called prayer line and prayed. I didnt feel like going to work that night. When I got to work they sent me to a surgical unit where people were stepping down from surgery. I was working agency and they will give you the most difficult patients. One patient (not violating Hippa) was a young woman who had cancer had every orifice but her mouth sewed closed and she was so happy and upbeat. There is this song by the sounds of blackness called hold on. It has been a theme in my life for many many year. One of the verses is how can you smile when your world is tumbling down. Well, I felt like asking her this but her strenght bought tears to my eyes and touched me and I felt stronger and better. Then I had a homeless man who smelled up the whole room and outsideand was cursing everyone and anyone that came near him. I dont even know how he had surgery but he did on his leg. After that woman I had so much love in my heart I came in that room and he was in bad pain. I got his meds and we planned on how we were going to get him cleaned up. I went and go the supplies and this man had got up and was on his leg washing up. We got done and what I got spread to him. He was like a different person. He even shaved. The next day I worked another unit and I got her again. Learned her uncle was a preacher I knew and her family was very supportive. A little love goes such a long way.
That what I feel sometimes when I read posts and messages and share. Just want to say thanks and thanks and thanks that little word or gesture or painful post or funny post, and the husband tools post goes a long way and lasts a long time for me. Gives me something to smile about and that smile sometimes works wonders for me.

Sharyn, Thanks. Hope your cold gets better. Try some zinc lozenges too. I usually do zinc and vitamin C.

I talked to Pam on the phone a minute. Told her, her friend Sue would be here tomorrow afternoon. She said she had a bit more energy. Sat in chair for 15 min
She said she ate a few bites of mashed potato and drank some vegetable broth. She tries so hard. She told Jay she knew she wasn't going to get better, but she wasn't ready to lay down and die yet. 

Becky, your trip sounds wonderful. I hope the physical therapy helps. A friend of mine who has FM uses the heated pool at the gym. She says it helps a lot.

Spent the day resting, increased fluids, vitamin C. Stuffed head feels like it’s too heavy for my shoulders, Lol! I so hate being sick.

I started back to Physical Therapy for neuropathy and rheumatoid arthritis this evening. My pain management specialist thought it was worth trying again. He wrote the order and insurance approved. The therapist seemed very good. She wrote an order for medical massage and whirlpool treatments. i have arthritis in my right shoulder and neuropathy in my left lower leg. Anxious to see if any of this helps. I certainly hope it does. I'm also going for a sleep study in two weeks. I saw my dentist today. Implants are fine and I don't have to go back except to my regular dentist for six month check ups. I'm able to use athletic dept exercise rooms at the university which is good, along with a personal trainer. I got my time set up for this semester and got assigned to a personal trainer. Pam prior to her cancer diagnosis was in excellent condition. She did walking marathons on a regular basis and her weight was perfect. I think her good habits have helped her during her illness a little.

Went to the hospital to check on things. Pam was propped up drinking her mint tea. She said she ate a shortbread cookie. She's coughing a little and says she can tell when her pain meds start running out because her back pain is intense.

PJ and I made summer vacation plans today. We're doing the big cross Canada rail tour. Starting in Halifax and winding up in Vancouver with several side stops. It will just be me and Pj. We'll be gone from July 5 thru August 8th. His DIL,who has been working with some international women's soccer group will be back in May and the twins will be gone. The 12-year old is going to stay with his Dad at the lake. This trip is something we both have wanted to do. Hopefully when we both retire in 2 more years we'll do more traveling.

Barb, I read the Susan Cheever book several years ago. I recall the part about her uncle. Probably because my dad spent time at Bell Labs in the 60's. He was an ATT engineer assigned to Chesapeake and Potomac Telephone in WV. He went to Bell Labs at Murray Hills in New Jersey several times to work on projects.

I went to the hospital this am. Pam was awake and talked some. She told me to go home and take some time away from sitting there since it is my day off. Her favorite nurse is there with her. I'll go back later. We are so fortunate  the hospital is less than 5 miles from our house so going back and forth isn't a long and it isn't a big expense.

Dorianne, I copied the info on the music and sent to my brother. He's the music and sound person in the family. He thought those were great ideas for Pam. He was familiar with the Queen tribute - Queen is one of his favorites. Thank you so much and the Pink Floyd.

Pam had a quiet night. I did too at home - and got some sleep which I needed.

Golden, I think what you wrote about brain fatigue was spot on. Paperwork tires me out as much as physical effort.

I like the variation on the themes, Dorianne. My daughter had to see an orthodontist when she was only four or five ("inferior protrusion", apparently - wanted correcting before her adult teeth came through). She climbed into the chair saying shyly "I've goth a wobbly tooth." He bowed at the waist, pointed his index finger like the fairy godmother, and said "but HAVE you got a wobbly nose?!" - gently wiggling said nose. Camp as a row of pink tents. Orthodox Jew, married, two children. "Esto quod es" was our school motto - be what you are. Let nobody tell you what that should be, let alone what you should be like.

Mind you, that's terrible advice to give to adolescents. Still.

Barb - "Everybody, I'd like to introduce our new neighbour, Dr Stern - don't stand up! He's only a dentist."

My BIL refers to himself as "the thick one" because he's a lawyer and not an academic like the rest of his family. Privately I refer to him as "the high-functioning one."

CM - my friend is not gay, but I'd say he's not quite straight either.   Bit hard to pin down, that one!

glad - my friend actually rented my spare room for a year, maybe 7 years ago? And I can verify that he is just really good and thorough at cleaning! I didn't have to lift a finger the whole year he roomed with me!

golden - I hope that too!  Being at home is definitely the thing I was needing. 

Yeah, I really DID need this weekend. It was like running away to a cabin on the lake, if I had a cabin on the lake! Except it's an apartment on the river. I feel completely refreshed and relaxed, and the cats don't seem at all perturbed at being shuffled about. As long as they're with me, I guess!

(((((Becky))))) Big hugs to you. I smiled when you said Pam is a lifelong headbanger....so am I, lol! There are some nifty String Quartet tributes to a lot of hard rock/metal bands that Pam might appreciate, and would work well in a hospice setting - if you have time to put some on a CD, or even play them on a cell phone or laptop for her.

Here is a full Tribute to Queen album: youtube.com/watch?v=1mQxkXbzggI

Here is the tribute to my own favourite band, Iron Maiden: youtube.com/watch?v=oMeL6IDJCvU&list=PLc_fcqskD_rCHYDcpIRmqQY5NUYn9K75y

You can quickly convert YouTube videos to mp3 tracks (audio-only versions, for putting on CDs, flash drives, or electronic devices) here: onlinevideoconverter.com/mp3-converter

Just paste the YouTube link into the field at the top of the page, click "Start," and then when it's finished converting, click "Download."

I mean, you could probably order any of that stuff, but I don't know how long it would take to get to you.  This is quick and free. 

I don't know what Pam's favourite artists are, but if you go to YouTube and type in "String Quartet Tribute" you will see a huge list of different rock and pop tributes. You can even try by band name by typing in "String Quartet Tribute (band name)".

My bandmates and I often discuss how really good heavy metal/hard rock/progressive music is actually just electrified classical music!

Edit - this Queen tribute by the Royal Philharmonic Orchestra is even better, though not as soft as the quartet stuff:  youtube.com/watch?v=4g4UZOedczs

And one to Pink Floyd:  youtube.com/watch?v=IBGeex66_t8

If you're interested, hit me up on private message with a list of artists she likes and I can look them up for you and send you the links.  I could spend all day on YouTube!  It's my personal Bermuda Triangle.....

dori -great and a good night's sleep!!! Hope you and the felines can spend a lot of time there.

cm - J sounds like a good person. Hope she is getting the best of care. Re Vit C - Linus Pauling???

glad - 8 hours sleep!!! That's a treat. Storms are fine when you don't have to go out.

becky - you bonded with Pam when you both were very young. it was fortunate she had you then, and it is fortunate she has you now. Nature music sounds good.

ali - very well caught!!! That's progress!!! I have found myself thinking that way a few times, but managed to nip my "generosity" in the bud before any words or actions ensued.

barb - so true. We are assigned roles and kept there. It is the family's loss and ours too if we do not follow our hearts.

The other day I was reading that post exertional fatigue in CFS/FM is not only muscular, but also applies to brain activity. The past few days I have been feeling sharp, organizing mother's papers, and multitasking (not physically) at various things quite well, and enjoying it. This morning I woke up feeling rotten, and could not even identify it further till the afternoon. Then I realised I was feeling like I had been hit by a bus, I was aching, and I had brain fog. I think it was post exertional brain type fatigue. It means I have to pace my mental activities as well as the physical ones. I guess I knew that at some level, but this really demonstrated to me that it is not only physical activity that must be paced. I turned off the tv, relaxed, took my muscle meds, had a hot bath. and am feeling better. Tomorrow needs to be a very quiet day.

The good news is that I can now read the shampoo bottle, well the larger print anyway, without my glasses. I guess that is a degree of success for the cataract surgery. We will see how my distance vision is when I get my new glasses. I still have ghost images.

On the horizon - dental cleaning, microblading my eyebrows and tattooing eyeliner, after the trip to E'ton early Feb. We are going to visit the funeral home where my son's funeral service was, and start with prep for mother's. I know it may be a few years early, but I would like to get some things in place to make it easier at the time. She was there and liked it, so I am content with that choice.

Take care all and be good to you.

Becky sending hugs and may you get some rest. You are doing great by Pam.

Barb, great words well said “ our families do not define who we are”.

Rough day, one person called in sick. Luckily we got a replacement to cover the shift or I would have had to work 11 hours. I sure wasn’t up for that. Resting now taking cough medicine, have good night.

Barb, Jay and I talked about music. Pam has a lifelong love of head banger hard rock/heavy metal. Not hardly Hospice music. I've got a nature sounds machine. I'll take it with me when I go back. Pam woke up a little bit. She talked very clearly with PJ. She asked for some white rice and mint tea. He said she ate a few bites and drank a good bit of tea. Jay and the new nurse are staying overnight.

I remembered a book I read years ago, when thinking about various dysfunctional families here the other day.

Treetops, by Susan Cheever is a biography of her mother's family. (Her dad was John Cheever, the famous mid-century American writer).

Her mom's family--her grandfather, grandmother and most of her aunts and uncles were physicians. Her Grandfather was the dean of the Yale Medical School, for goodness sake.

One of her uncles "rebelled" and became an engineer. He was considered an outcast and the black sheep of the family. When he would occasionally come by the family compound during the summer months, he was referred to as "poor Uncle Tom" and roundly shunned by his father and siblings.

Many years later, Susan discovered that "poor Uncle Tom" was Tom Watson, a brilliant PhD engineer, associated with Bell Labs. He was the grandson of "Watson, come here, I want you" who was Alexander Graham Bell's engineering assistant. He followed THAT grandfather's footsteps in becoming an engineer, but was always treated by his family as an "idiot" because he was a doctor of engineering, not of medicine.

In dysfunctional families, children are not celebrated for their talents and their achievements; they are put into niches at an early age and kept there.

We all need to remember that our families do NOT define who we are. That's up to us.

But Ali, you DID see that! what a victory for you!

You started to jump to "fix", but you realized, not "just in time", but after thinking it over, that this is NOT your job to fix stuff. Wow, great progress!!!!!!

Becky; I'm so saddened reading your posts. I hope that Pam is pain free and at peace when it's her time. Consider playing favorite music for her while she sleeps, softly.

Hang tight Ali - Bro can take care of it.

A small issue but representative of bigger problems: older bro calls me up, wants to know about my dad's missing power cord and pedal for his electronic keyboard. I know this has been an issue for at least 9 months, I've advised my mother and my dad how to get a replacement. The issue for my dad seems to be that they're missing at all. Well, sorry, there was a sewage flood in basement and during the long and difficult clean up, things were thrown out while dad took a vacation at my bro's house. I didn't mean to throw out anything useful but it may have happened. So today my bro is asking me, and I INSTANTLY volunteer to get replacement pedal and power cord for the keyboard because somehow I feel this is my responsibility to get everything A-OK for my dad.  

After looking online and seeing these replacement parts are abundantly available and cheap, I'm wondering why I would ever be the one ordering them to ship to my dad's place. Bro or mom should do it. I can't return the items if they don't work. And why am I volunteering so fast?? So I threw that ball back to bro's court and said he should order the items. Bro says ok.

There is no problem, only that I continue to not see how others are available and can do these things, too. It's not just me that can care for things and I need to remove myself from the equation of my dad's care wherever possible.  I only make things more complicated.  Bro just wanted to know what I knew about the missing parts.  I told him.  Now bro can order some as he sees fit, or dad can continue to go without.  

((((((becky))))) This is a hard time. All you can do is be there as you are. Look after you too. A family member with her all the time sounds right. You all are doing the right things. There is no easy way through this. Prayers for peace for all.

Yes her private duty RN's are here. Along with Hospice nurses on duty. Yes there a recliner and a cot. The waiting room is very nice if I want a change of scenery. I feel like a family member should be here with her and so does Jay. I called her friend Sue and told her what was going on. She is going to come as soon as she can get a flight. I think it will be early Tuesday. PJ is on his way. He's going to bring me some dinner and sit for awhile. He wants to talk to the doctor who comes at 3 to see if he needs to call the priest.

Ahh, Becky
Cousins are our first friends

Is there a recliner in the hospital room for you ? Will you have the private aides come on Sunday to give you some respite today?

I was looking a photo from when I first saw Pam. She is my first cousin on my dad's side. When she was an infant her mother was injured in a tornado. Her dad had to work. Dad drove to Cleveland picked her up. They set up her crib in my bedroom. I was 5 years old. She was such a cute baby. I sat and watched her all the time. She stayed with us for 6 months until my aunt recovered.  Now here I am sitting and watching her sleep again.