The Caregiver & Dysfunctional Families: How are you doing?

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."

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.

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.

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.

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.

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.

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. 

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.

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.

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...

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 coping and may just be able to enjoy her friend's company a bit

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!

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!!!!!!!!

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!!!

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

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.

My FIL has declined quickly since his fall and hospitalization before Christmas. The COPD has weakened both heart and lungs, and he has pneumonia. He's been in and out of the hospital. Sadly, he's now in long term care with hospice added to the team. I'm feeling so profoundly sad to be losing this dear, sweet man. But I'm also grateful that the decline has been swift and he's not in pain.

DH is still trying to wrap his head around all the changes - we went from need to go to SNF to long term care to long term with hospice in two weeks. The stress is making his PD symptoms worse. That's left me with all the coordination, hard decisions, tracking down staff, etc. The kids have been terrific thru it all.

A couple of the grandkids are trying to see if they can arrange flights and time off work to see Grandpa now. BIL opted to stay home until there's a funeral, as he wants to remember Dad as he was....honestly, I'm relieved as he's been so flip and cavalier about it all that his presence would be difficult, not a comfort. I really need to get past my frustration and anger with him before he hits town. The trust paperwork will go to the attorney before he gets to town so a third party will be handling all the nuts and bolts. The jewelry was already given to the granddaughters, per Grandma's wishes. Grandma's painting supplies went to the artist grandkid. Aside from some silver and china, I don't know what he thinks is in the house. Families......

becky ((((((hugs )))) to you and yours for caring for Pam so well and each other. What a blessing you are to one another. Jay does seem to have magic with the women!

Linda - I am so sorry for all you have to deal with. Fil's decline has been on a fast track. Glad bad bil is out if the picture for now. You don't need the extra aggravation. Be sure to take care of you. You seem to be the hinge pin and carrying a lot. ((((hugs)))) to you too.

Well the mysterious hearing aid bandit has struck again. Mother's new hearing aid, about a week old, is lost and the other one, a couple of months old is damaged. None of the nurses think that mother is taking then out herself, but I suppose we have to consider that as an option. Apparently the routine is that they are removed at night and put on the "medi tray". Maybe they fall out when she has her nap, though she's not a restless sleeper, or they are not being put in properly, so they could fall out any time. during the day. I presume they can only be damaged by being run over by something heavy. When I go down we will have a meeting with the nursing staff and try to figure out what is happening. I need to know what the sequence if events is. and where they find the damaged h. aid. Do they pick it off the floor, or is is out neatly back where it should be on the meditray? I wonder if the meditray is out of reach of other residents. Aaargh this is getting expensive. Funny -I dreamt last night they were gong to call me.

Lots of sleep here and a very quiet day and getting some energy back.

Golden, if your mom is mostly resting quietly in her room you might want to consider whether it is necessary to replace the hearing aids at all, I've found that my mom manages just fine with one on one conversations and that any musical entertainment is usually loud enough for her too.

cw -thx I have thought about that, but she does not seem to hear enough during conversation without hearing aides to manage an appropriate response. When I speak to her she says she cannot hear. That might not be a good thing when interacting with the staff. I am wondering if some kind of headphone would be better, to be removed at nap time and a bedtime. I suppose there is a possibility that she is removing the aids, as they may be uncomfortable say, at nap time, and then they land the floor. I don't know how far the staff are able or willing to go checking during the day to see if/when she has them in. Without a plan in place, and/or some light on the subject, I don't feel good spending $4000 + on yet another set to have them disappear again.
This happened once about a year ago at her ALF. Before that there never was an issue.

Linda 22, I'm sorry about your FIL's decline. I hope the family drama with BIL is at a minimum.

Golden, thank you for the support. Pam herself makes things easy. She isn't a complainer and is very cooperative with everyone - even when in severe pain. Jay has been so good and so helpful. He and Pam have become very close. Her friend Sue is the kind of friend we would all be lucky to have. Sue is staying overnight tonight. Pam's private duty nurses are wonderful. They take of everything and do everything they can to keep Pam comfortable. PJ has been great to. He visits at the hospital regularly with patients from his parish. The parish only has a part-time priest. As a lay deacon, he goes to say the rosary or pray with anyone who requests his presence. Pam is Catholic and he includes her on his visits.

PJ and I had a nice dinner out without the boys which was nice. Hope I sleep tonight.

Rest well everyone

Becky, sounds like Jay may be in for a nice matchmaking scheme, one good thing deserves another. It so nice to see the support and love that comes from being united. Maybe being so busy is a good thing. Take care of yourself in the mist of all the stress.

Linda sorry about your FIL situation. I hope things get better.

Golden, there may be a thief in the mist. glad you are getting rest. I took a cq10 20mg yesterday and I felt good today. I wonder if its an antidepressant. Anyway I took before and got energy. I bought some on line 200mg and it did do the same. I felt happy and hopeful.

I still am not hearing anything about the trapy. I called today and the person who answered the phone said hello hello twice and hung up. I called back and got answeredng machine. I dont know the delaeg the counselor says give it to thursday. The other thing going on is the same. I feel actuallly I know I am the only one who cleans up the poop besides my mother. I know Ima the only one who mops. I get frustrated but I know it needs to be done. When I dont do I feel guilty. which really means I should just go on and do what needs to be done. I just wish I could clear away those thoughts that make me need to stop doing it. I just took a break a few days, it stinks.
My mother is getting more and more active packing things and rambling through every drawer cabinet nook and cranny and there are a lot. I will be off tomarrow nite and then back on thurs nite.

I am still feeling anxious about everything. But today I feel like I can do something about take a chunk out of the mountain. I hope I still have this in me when I get off in the morning.

Everyone be good to yourselves. Smile! Rays of light and peace to all.

Just a correction. The 200mg Cq10 did give same results I think it was too much. Please excuse the typo.
It could also be the weather. Its almost spring like here after freezing temps. These changes in whether are scary. Next week it could be a bizzard.

becky =it is wonderful there is so much support and everyone is pulling together. What a difference from caregiving your mother! 

madge -I hope the ENT visit tomorrow is productive

duck - I sure hope you get that therapy lined up. Co Q 10 is good and so is resveratrol. You might want to give that a try.

I went online and looked at ear phones for the hearing impaired that can be used for conversation, or for tv, and found a wireless one that had many good reviews, so I ordered it and will try it here myself. It should be harder to lose than hearing aids. She could wear them when she is up and have them removed when she is in bed. The staff can press the button for conversation or TV. Might work?

Golden, my mom's hearing aids were lost soon after moving to memory care. Ts2 elected to not replace them. They were $5,000. So mom went without for two years until she passed. I would have replaced them, she really needed them to hear. And had they been lost again, insurance would have replaced them once. Then if third pair was lost, I would have tried to find another solution. Mom had some headphones from bed bath and beyond that she used at home because the speakers on new tv's are on the back so sound is not projected into the room. They were cordless and worked quite well.

Becky, your family sure seems to work together for the benefit of your friend, Pam. I don't at all understand how you do all you do with your health issues. Teach university classes, three of them, caregiver support, alcohol abuse counseling and still have nice dinners with PJ. When do you sleep? Oh and the care and companionship you are providing to Pam.

Madge, what do ENT's do with blocked salivary glands? That is one I have not heard before.

Sharyn, hope you are feeling better.

Made chili on Sunday to have with the snow. It was a decent storm but only about five inches. I would have really enjoyed two or three times that amount. Heck even four times. But then I would have to find someone with a tractor to plow the driveway out. Wouldn't know where to start, the phone to people I know to try to fine someone. I am on a school route so someone comes through with a sidewalk sweeper in front of the house which is roughly 250 feet, I guess. So that is wonderful! I remember when I moved here, looking at that sidewalk and wondering how in the world I would get it done.

Have a good evening everyone.

Ooh Becky! That train comes through my town! I'm not sure if it makes a real stop here (the Rocky Mountaineer does, and Via used to but I don't know if they do anymore). If you come through Kamloops, let me know! I can at least wave to you as you whizz by! Lol.  Big, big hugs for you and Pam. 

Duck - if only you were close by - I was just thinking of getting rid of my kitchen table at home! It's in good shape but a friend gave me a smaller, handmade table that I love, so one needs to go! I feel ya on the decluttering. I've definitely made a small hurricane aftermath in "my" room at mom's - there is nowhere for me to put anything! There's a desk, with her giant computer system and all HER stuff on it, the twin bed I bought to put in here, and....not even a closet, 'cause she had cubbies built into it when she first moved here, and they're all full of HER stuff! I got a plastic Rubbermaid set of drawers, I'm going to start there. We can be declutter buddies, if you like!

golden - oh no, not the hearing aid! I feel your pain. I just got mom convinced last summer to get new dentures. Well, she has lost the bottom plate a few times now, and this time it's been since just before Christmas and we haven't found it yet! I had her name engraved on the inside of them just in case she ever had to stay in hospital or in care....I think that was probably wise, lol.

Well....I had a nice night tonight. Best guy friend was coming over for dinner, so I also invited BFF and her hubby, whom I needed to help me replace mom's broken kitchen tap (she is tough on taps....she wrecked the ones in my apartment too, years before dementia was involved!). I made two racks of ribs....I probably could have made a third, they were yummy! And not only did the faucet get put in, but BFF's hubby also switched the door on the clothes dryer so it opens the other way (it was really awkward before!). And BGF took the garbage out. I love my friends, lol, and not just because they are so helpful!

Oh, plus....the ribs were the ones I put in the freezer for my brother's Christmas visit....you know, the one that never happened? Lol. I felt I'd waited long enough to have Christmas dinner!!! I finally started taking down decorations today, so it felt totally appropriate to chow down on those ribs!

Edit:  also my kitten discovered the catnip for the first time, sometime while I was napping early this afternoon.  (I know because it was spread ALLLLL over my bedroom floor when I woke up!)  Consequently, he has been super lovey-dovey all evening, and even went running up to BFF as she came in the doorway.  So that was sweet also. 

I always assumed our hospital had non-appetizing food because that's how hospital foods are supposed to be. Then I went to Hawaii and had a major surgery at the women/children hospital. I had a large room, shared by a roommate. We both had TV's but my family and I are not into television. We just pull out our books and read.

But, this hospital supplied me a menu for what I wanted each day of my stay there. Breakfast, Lunch and Dinner - I chose from the different options. I really loved it when I saw that I wasn't automatically given a low-fat milk and OJ (like here on island) since I'm lactose intolerant and acid reflux. I chose hot coffee, toast, eggs and meat. The morning I woke up after my surgery, they brought our breakfast. My tray looked so empty compared to my roommate's tray (she chose a lot of food!) I finished my food. She wasted most of hers... I thought that All hospitals were like this one in Hawaii! After reading Pam's and Veronica's description of their food, I guess not!

Glad, I have two big pluses. I live in a small town with one stoplight. I spend no time commuting. Secondly, we have a full time housekeeper, so I don't have the normal household things to do except cooking occasionally. I do a lot of different things but none of them are time consuming like an 8-hour full time job. Tuesday is my worst day. Alcohol counseling is usually only busy Jan - March. I'll have up to 8 clients. Rest of the year 1-2. Helping my cousin Pam is not what other caregivers go thru. I don't do anything hands-on. She has 24-hr personal nursing care. There is no drama with other people. My brother takes part of the time at the hospital. Her friend Sue is here right now - huge help. I run in and out a couple of times a day. I see the struggles some the families have in the Hospice unit. I don't know how they do it. They're amazing people. Finally, at times I crash and have to catch up.

Dori, Did you mention "the Loops"? Kamloops? It's on the itinerary, but they haven't listed all of the stops on the trip. And we have a certain number of optional things we can pick. Looking forward to the trip so much. I've spent time in the eastern provinces, but western provinces my trips have only been for hockey tournaments when I worked with the Athletic Dept. Fun, but I never saw much. Most of my time was spent trying to catch up with players who were trying to escape supervision. Typical 18-23 yr old guys.

Time to get my day started. everyone have a good day.