lack of information

Hi sjg,

Welcome to Caring's groups.  I'm really glad you posted.

I know, firsthand, how difficult it is to get straight answers from doctors sometimes.  It's like nobody wants to commit to anything and sometimes that feels like they are just trying to protect themselves. 

I haven't got any great answers for you, but I definitely understand where you're coming from and know how frustrating it can be.  Is it possible for you to get all 7 docs together for a conference?  Maybe some collaboration will make a difference for you and your mom.

Missy, I have even taken the time to sit with each dr and am ready to fire all of them because of this, my mother is getting worse, yet because my father left her some property she does not qualify for alot of help.  I am trying to find someone to help me out so I can take a break now and then.  It seems like the drs are not interested in a patient after a certain age or if they are not in a certain money bracket.  Each dr seems to want to change her meds and we start the merry go round over and over.  I watched my father slowly pass from us and now it seems as if I am going to watch mom go and it is so difficult and no one understands when you need to vent or talk unless they are in the same boat.  Thank you for your response and allowing me to vent. 

TIA's seem to be the new catch all phrase for what drs dont  understand.

My pleasure, sjp!  That's why we're all here...to vent, to listen, to give and take support.  I'm glad you found us!

TIA is a mini stroke...Its called Transient Ischemic Attack..If you google this you can get some answers..

My grandmother had several of these and after a while I found that even taking her to the ER was a waste of time and just caused her confusion and they didn't do anything at all except run tests and tell me that she had a TIA and send her home..

I agree that doctors don't really seem to care after a certain age but I did find a geriatric doc that did what he could and explained things that happened and what our options were..

My grandmother would become very confused and not be herself for a period of time after the TIA's and the more she had the worse and longer that would happen...

I wish you luck with your search for a good geriatric doc, it is a frustrating road but when you finally find one that is good all of this will just become a bad memory in the past...

Please keep us posted...

I have researched TIA'S till I can't see any more and the problem I seem to have is they do not know what causes them and how to treat them and I agree the hospital is a waste of time and effort.  We are now finding that my mother is developing dementia and that adds to the confusion and exhaustion.  Mom is tired most of the time and wobbly and walking is difficult and the neuro dr suggested the test where they inject dye into the brain but the sideeffects were worse than the tia's.

It seems there are not alot of options except round the clock care and kindnes and love.

(((((sjg)))))

I can almost feel the pain and frustration in your typing...I am so sorry...

I can say that I ran in to pretty much exactly what you are now..No answers and my grandmother just became so confused, tired and wobbly...Each TIA she got a little worse..

I wish I had some brilliant answers for you because I clearly remember my frustration during that time and I feel helpless here...

I also watched my grandfather and dad suffer, both with cancer  but my grandmother didn't suffer even with all of the TIA's, she wasn't in much pain after the TIA symptoms subsided and when her time came she died quickly..

I am sending positive thoughts your way and hoping things get better for all of you..

thanks Cindy, seems unless you have been there you can't understand or help.  There are so many people who say if you need anything just call and when you want an hour or two they are nowhere to be found or else they say when I saw her she was great, they don't understand the sneaky method of TIA's and how they exhaust them.  Dad died of congestive heart failure and we have 10 years of coping with it but mom was so active and vibrant until 4 months ago and now she if feble and scared.  the suffering with this is mostly emotional and exhaustion.  also the way the medical society seems to ignore the aged, in some countrys the eldery are exhaulted and in the good old usa we put them out to pasture, at least sometimes it seems that way. 

I realize that most have lives and families of their own, (I have three grown daughters and two grandkids) but when we were little they did not give us up when we were brats or sick so now it is our turn.  Wish the rest of the country would realize that and make it easier on the elderly.  they need to remember we will be there one day also,.

sorry had to vent alittle, its been a rough day and mom is weak today and depressed.

(((sjg)))

Vent away..It does seem unfair the way the medical community treats our ageing loved ones!!

I also understand what it is like being the only one available to care for a frail person, I never had any help either and I also had 2 children and 2 grandchildren..

Just like you, my grandmother was always there for me when I was a child and I felt like I needed/wanted to give back to her..

I sure wish I had some magic words to help but all I can do is try to be supportive and listen to you..

I do hear everything you are saying and I know how hard this is for you..

If you need to vent then you should vent..

My grandmother did have periods that were as you describe but after a few months she seemed to come back to her normal again and I hope that also holds true for your mom...

Try to take care of yourself if you can grab some time away..

Sending good thoughts your way!

Good Morning Cindy,  today is better than yesterday, mom is wobbly but doing ok, her sister is going to come visit so I have to make sure the house is extra clean, she is real picky and dont want mom embrassed.  Thank you for the support

Shirley

Good morning..

I'm so glad to hear today is a better day!

I'm also glad that your mom is getting a visitor but don't worry too much about the house, remember she is suppose to be coming to see your mom, not your house....lol

Hope the day stays calm for you..

I just found this site by accident but I wonder if it was really an accident or meant to be..

I know how hard caregiving can be and maybe I was suppose to find this site for a reason..I don't have all the answers but I am a really good listener..I felt somewhat confused about my life after my grandma died in Sept..Wondering after all those years of devoting my life to her, what my purpose was after her death..One of those self pity moments I guess..

Its funny but supporting other people can give us back more than we give so selfishly I say "anytime"..

I dont believe in accidents anymore I know there is a reason for everything and everyone, caregiving can suck the life out of you and yet give you the most emotional high and low you have ever felt.  when i was the primary caregiver for my dad, it was so easy and fun.  with mom she makes everything a fight and drama and when she has a good day she gripes and lets me know just how bad everything is and am not complaining that is just her way, she has always complained about everything and everyone.  Dad was the gentle soul who gave to everyone and everything and mom was the practical one who cracked the whip.  Guess I am still at odds with not working and having too much idle time and there is only so much you can do.  I miss being able to earn a living and spend my money on what i want and need or dont need.

You have a purpose, you have the experience and knowledge to help others and you have your children and grandchildren to be with and to love.  Enjoy the grandkids they are gods way of punishing our children for all the wrongs they did as youngsters ( i say that lovingly)  my granddaughter who is 4 is going to make my daughters life a living hell, not only is she smart but pretty and stubborn and determened. my grandson is handsome and my dads buddy when he was alive, and i beilieve he is his guardian angle and will guide him, and he will also give my daughter a run for her money at 11 the girls are already calling him and wanting to "kiss" him. So I can sit back and smile and think about how I got my grey hair and spoil them rotten and send them home. 

Enjoy , try day trips with them and smile you deserve it. 

ok enough of my soap box have to go clean the house

shirley

Thanks sjg,

I do love spending time with my grandbabies and it is fun watching them grow...My granddaughter is 13 and you know what that means...lol

She stays with me a week every summer even though I do get to see them alot..She is coming over soon to work for us doing some filing and to make some play money for the summer..

My grandson is 6 and boy does he keep his mom and dad busy! He is a very active child..

I take them to the Florida house sometimes, they love it there..

I just had that feeling of not knowing my purpose while I was grieving but I am doing ok now..Somehow I always stay busy..

Hope the visit with your moms sister was a good one..

Take care!

I think grandkids are Gods answer to everything.  They make life bearable.

My grandson is 11 and he is the one with bedroom eyes and all the girls chase him and call him.  Boy is my daughter in for a handful!!!!!!!!  My granddaughter is 4 and so smart and beautiful and stubborn, she is going to give my daughter grey hair very early!!

Sometimes I feel like I don't have an identity anymore nor do I have a life. 

My aunt came to visit and kept telling me what I need to do and never considered that maybe she should come and help instead of being so easy with orders.  They have no idea what a day is like nor do they know what we do all day long and how exhausted we are and I can not do anymore there is only one of me and as it is I have barely any time to bathe!!!!!!!!!!!

Staying busy is the only answer, but loving yourself or at least liking yourself is the first step, When Dad died the hospic staff really helped us to accept that there was not anything else we could have done or tried, that we did our best.  So know you have done your best and God just needed another angel. 

You never stop grieving nor missing it just gets tolorable eventually.

Have a good one!!

Shirley

After retiring from teaching at 54, I kept wondering what my new purpose in life would be.   I have found it - it's taking care of my parents.

I have learned  that you must constantly ask questions . With my parents and  also with myself , I  question the nurse,  physician's assistant  and the doctor. You have to be aggressive.    I walk in with a list of questions and have my notebook and pen in sight so they know  I'm  serious.  I have also gone in and made suggestions (with my research from the internet,etc) and sometimes they have been taken or the doctor explains why they won't work. When you really show an interest the docs seem to talk more.

My mom has been hospitalized many times and the nurses station people are glad to see me leave. If they don't answer the buzzer soon enough, I'm right there at the nurses station. I know the nurses are busy so I usually get water and other things for my mom but of course,    I  have to ask where the things are. They get to know me.

Since your mom's 7 doctors keep wanting to change her meds, I hope you keep a list of her meds,dosage,what they're for  with you when visiting all these doctors. Sometimes doctors  have to change meds to find out which one works best and which dosage is best for your mom.

Remember   ASK QUESTIONS     ASK QUESTIONS     ASK QUESTIONS

Good luck,

PS  I really hate to suggest this but you could start crying . It has worked for me once or twice

It's me again. For some help with caring for your mom try your church or senior center. Offer a few dollars and maybe someone would like to help out. There may be an adult daycare center near you . Even one day a week there for your mom could help you find some relief.  You have got to take care of yourself. If you are so depressed, check with your doctor for medication. Many people shun medication but it really helps a lot. Hopefully you could get an adult sitter so you could get out and be with people once in awhile

Another idea struck me. Don't extra clean the house before your mom's sister visits. Let her see how hard it is to keep the place up. Maybe she will visit more often and help out.

i have been fired by a couple of the doc's for asking questions and asking to see her chart and reports and then being too aggressive, sometimes our manigerial skills make foes instead of friends.  Like you whenever mom is hospitialized I am there and find that the nurses can be your est friend and ally.  I have asked and presented the doc's with results of test's taken by other doc's and even played the southern charm on a few of them.  Hate to tell them but I pay for my blond streaks, I was not born with them and thanks to the internet we have a wealth of knowledge and since we know them the best they really need to listen to what we say, again I am venting.  Mom lost her balance yesterday and we spent the afternoon at the hosp. and were lucky she is only bruised up and today she is very wobbly.  I know that it is my job and responsiblity but it is frustrating for the medical guys to not consider that three/four months ago she was healthy and active and now about half of herself.  It is also hard to watch your partent get weak.

my aunt would just tell me what i have not done again. as of now she wants me to also manage to find activities for mom and to take her all around and do nothing but that and then told mom to take the bus if i could not do it---she is 88 and never had to take a bus in 70 of those years so why should she now we are doing our best so why do people always tell you what you are doing wrong or what you need to do and then not help

i have found a girl to drive mom around and that gives me some me time and am working on finding a live in to help, when mom fell down i could not pick her up and had to call for help-----so i now realize i need someone here to also help me, if it had been at night i would have been up the creek without a paddle. 

her best friend just brokeher hip and it scared me and when she fell all i could think was god no and then it was worse when i did not have enough body strength to lift her--scared me. 

mom and dad were each others best friends and never went anywhere without the other one and since dad died mom has been lost and now that she is ill it is even worse and adult centers sound great but dont know if she will accept it.

Dear sjg,

It's Kimberly again. See, you are working your way through this (getting the girl to drive).

As a former teacher, I like to keep my letters organized by topic but I have so many thoughts I will be jumping back and forth.

It took awhile for my parents to accept the new role of children and me as mother but finally  they joke about it.  My sister and I scouted out adult living accommodations. When we narrowed it down, we took my dad to one or two.We looked at places that had all three living situations- regular apartments,  assisted living, nursing and rehab. My dad was agreeable and my sister would come up, we would hire movers, and get the place ready so mom would not have to lift a finger. When an apartment became available, my mom just couldn't do  it and started crying. The timing was not right. They do live in an Over 55 apart. complex on the first floor. There are no steps to deal with, there are pulls to call for 911, the bathroom is large and can accommodate wheelchairs. They also receive Meals on Wheels.  They started out getting the meals 3 times a week but now get them 5 days a week. In our area, the food is good and you pay what you are able.

Sell the property so mom is available for more help. Or have her put it in your name, all the while explaining gently over and over that this is what has to be done. I hope your mom has made a will, given you the Power of Attorney and agent in a Health Care Proxy. Do this very soon before her dementia gets too bad. An ElderCare lawyer can guide you on all this.

My mom does not like my sister telling her what to do because of her attitude. So, I explain it to her in a nice manner. Of course, I have been repeating the same things for a few years but little by little she is cooperating.

Be stern with your aunt. Have a quiet talk with her and explain everything to her- how difficult it is for you to do all,  how your health is suffering (both mentally and physically). Could you hire a cleaning lady say every 3 weeks to help keep the house up?  Cleaning services probably are more expensive. Ask around for women who do it on their own. When I worked, I had to use the weekends to clean and never had much time for myself. Hiring a cleaning lady was the best idea. I hate cleaning and have kept this woman on even in my retirement. This is a nice gift to myself and I don't get crabby.

My mom also is wobbly. She used to use a cane but now uses a walker all the time because of being afraid of falling. In fact, she has fallen a few times. 911 can become your friend.  Now they keep from me the fact of her falling (they do slip up and I find out  later). They just call 911 on their own and thankfully no damage has been done to her. They do have wall to wall carpeting (except in the kitchen and bathroom) which helps cushion the fall.

We  bought a portable wheelchair (medicare will cover 80% of the cost when buying necessary equipment , you need a doctor's note), one that I can lift up and put in the trunk. My mother does not like to use it but it does come in handy. You could take your mom for walks , even just around the neighborhood . We also bought a commode with arms on it so that my mom doesn't have to bend so low (had many back surgeries) on the toilet.

On a good day, have a nice and quiet talk with mom and explain how you just can't do everything. Let her know how it is affecting you healthwise and if you get sick, what will she do?  I very rarely have to tell my parents that. They see how tired I am and feel sorry for having to bother me. One year I had to cancel a ski trip to Lake Tahoe (that was the second time I did not get to Lake Tahoe, the other time there was no snow there) because my mom had an overdose of meds from the doctor.

If I do go out of town, they have their emergency list on a door. On that list is a good friend's of mine phone number and they know her, so they feel more comfortable if something happens. In Sept. when I went to Italy for 3 weeks, my sister and her hubby took their vacation to be here for part of that time.(They usually come home every summer). Could one of your daughters come for just a week or few days to give you a break? She could bring one of the grandchildren with her in the summer. I'm sure the child would not mind doing some chores for a few dollars.

Mom may not want to get out but  do activities with her. One time at my mom's center in the complex they had a tea for the ladies. I acted really excited and talked her into going with me. How about Bingo?

For you -  find a support group,  have lunch/dinner with a few of the people you used to work with, maybe an easy part-time job could be worked in,  go to a movie matinee by yourself, sometimes Senior Centers have activities and lectures. If you could get someone to watch mom for a day, you could find a group to take a day trip with ( the Red Hat Ladies are all over and do activities and day trips). You MUST get  out with other people. You are doing all you can and do not feel guilty. My friend took care of  both of her parents for 20 years. After her mom passed away,  her father became nasty to her, even threw things at her. She went well beyond her duty as a daughter and still felt guilty about her father's death.

When I said to be aggressive with the docs, I didn't mean to steamroll them.  I guess I came across as a toughy. By aggressive I meant to keep on persuing in a friendly manner.  Be careful of your tone of voice (I have had to work on that my whole life).  I cannot believe doctors have fired you!!!!!!!!!!   Personalties can clash.  I had arguments with one doctor and we quit him (I'm sure he was glad to see us go .That was a time when I was starting to lose it).  I  left a doctor of mine because he told me to stop whining during a colonoscopy. If a doctor is at loose ends in what to try next, that is when he /she may take your suggestions. After  this situation with your mom is  taken care of, I  would make a complaint about those  doctors to the Medical Board.

By law, you have a right to see the records but you must get a release form from the doctor's office and have your mom sign it. You may also want one of your daughters name put on the form so you have another source to converse with. Some doctors charge for making copies of the records.

Back to your aunt. She is old and just does not understand so try not taking it personally - easier said than done!

Here is my situation.  My parents do not live with me so I do not have to deal with them 24/7. I live very close by. They used to live farther away and it took awhile before they moved closer to me . Even though my dad is 93 (he has a sister and brother older than him, longevity is in my genes but I feel no need to live that long)  he has no serious health problems ,can walk and even still drive  around our area. So that is extremely helpful. He recently had cataract surgery and could not drive for two weeks. That was a bit exhausting. He can take care of my mother most of the time. My mother has had many back surgeries and now has arthritis all over. She has been in pain for so many years. We have been to many doctors about this. It's her pain management doctor who was receptive to my suggestions.  She has several doctors to which I take her to, do a little of her laundry, bring home clothes and other items because she cannot shop for very long (I also make many returns) , taken over control of her meds  and the banking.  These last two were very difficult for her to accept but  too many mistakes were being made. My dad helps with the banking by signing checks, placing them in envelopes and stamping them. It drives me nuts when he checks over my figures but that was his job when my mom was doing the banking. Of course after all this, I stay to visit because they are very lonely. This is not all of what you are doing but I do get exhausted. I could not handle all this if I was working (and I'm single,no children). But I did not have to retire to provide parental care. That came later.

I am trying to simplify their living and my own townhouse is messy with all  projects I need to do for myself. I'm not complaining just stating the facts. In fact, my parents and I have a very nice relationship now  and we are able to laugh at a lot of things. If you check out my nephew's professional website, the two oldest people are my  parents:                                                                                     www.craigelliottphoto.com

I am going to my health spa in Florida at the end of June. I need to get back into the exercise mode and get some sun. The gourmet vegetarian food is delicious!!!                                                           

Hi Kimberly, sorry took so long to respond but Mom is having another bad day and I am also trying to finish the touch ups on the house, am trying to update it so when i put it on the market it will sell.  I realize now is not the time to sell with the market being so soft so I am going to enjoy it while I can and downsize later esp after I enjoy my kitchen and bathroom.  Seems I just fixed up moms and now am doing mine.  I envy you going to the health spa, but if this girl works out I am going to start taking a weekend every now and then and enjoy life to the fullest. 

Mom when she is weak is sweet and when she feels good very critical of everything being done. sometimes I cant figure her out and if one of my sibblings would help it would be a miracle, they did not even help with dad, so this is nothing new. 

i wish it were as easy as you say but my reality is nothing like that and guess i will adapt just need to vent every now and then and feel like there are others out there who understand and care.

mom is calling will continue later

Hi sjg!
You're right, my reality is not yours and I am grateful for that. Have you tried explaining to your siblings and getting "aggressive" with them? It can't hurt.
I'm glad I found this site because now I can help people, even if it's just listening. Teachers are always trying to help people and we always have some ideas. Just saw "Sex in the City" and really enjoyed it. The girls were shown ageing and now I don't feel so old.
Bye for now       Kim

Hi Kim, sorry but I have been very busy, mom fell down last Friday and we were lucky there were no broken bones but alot of bruises and contusions.  She seems to have gone backwards this last week and even though Maria and I are taking her in the pool every evening for exercise she is not getting stronger the nurse said this put her back to the begining and we are starting over.  I watch her weaken and it is scarey.  If I did not have help it would be impossible to care for her.  she sleeps alot and I am having to make her protein shakes and give her flavored pedilite so she does not dehydrate and fights anemia.  I have one daughter who taught for several years and now has gone into er nursing (two degrees) and I have another who teaches middle school.  my other daughter seems to run her own business and take care of my grandkids which is a job in its self. 

Have not had time to watch tv and or read lately, when i finally hit the sack i am so exhausted that i crash and then wake up every several hours to check on mom so i never get to really rest.  I think they say idleness is the work of the devil so I figure the devil will never be around here ha ha

Thanks for taking the time to listen to my rants, it helps alot to be able to talk (write) to someone who has been here and knows what is going on.

My sibblings do not communicate with mom at all they are in their own world and do not want or care to be here--in the end it is there loss and cross to bear knowing they did not care of be there for their mother.  I only hope they do not have to know what she feels  becasue they have children and I have always heard that whatever you do comes around to you eventualy (karma is a bitch) and i would not like to see them suffer as much as they have made mom suffer by their stupidity.  You can not make someone love or care for another person, it has to come from the heart and only god can help there.

Shirley