ElderCare Online The ElderCare Forum The ElderCare Forum New Caregiver's Meeting Room Please help, I'm lost on what to do and not getting help!
The ElderCare Forum The ElderCare Forum New Caregiver's Meeting Room Please help, I'm lost on what to do and not getting help!|
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Here is the (long) short and sweet:
Mom had a massive stroke. She is 80. prognossis unknown. Paralysis - max assist still after 3 months. Was previously fine and living alone in another state in our family home. Brother lives near by, no kids but a wife who provides no support because "Mom wasn't nice enough to her" She "won't allow" my brother to participate and thinks she should just be put into a nursing home. 2 other sisters, one who has financial problems the other who has had no contact with Mom about 7 years including after dad died. I am single and live in another state. I went home the day after the stroke ended up staying three months. Still having to pay bills in another state, have no money coming. Mom is nearing the end of her 100 days in a skilled nursing facility. For the last week I went home to collect some warmer clothes and take care of a few of my personal things and get a break. No one has done any leg work but me to try and figure out what we can do. Nothing I have found out has been concrete just lead to more questions. They are taking "the ostrich approach" and just assuming that I will do it I guess. My brother has POA for finance and Health Care since he lives close by I am trustee of her living trust. The fact of the matter is my brother wasn’t even aware of what my mom’s wishes were when the time came. He is not aware of any of her financial dealings or holdings which aren't much. I have been managing all her bills for the last 2 years. For various reason it appears that my siblings believe that their lives are more important than my own and that I should be the one to go back to our home state to care for my mother. When trying to discuss some sort of compensation I feel a little uncomfortable and unsure of what the future might hold for me like if she goes into a medicaid spend down situation as I might have to pay back $$ or the legality of paying myself thru the trust and what is acceptable compenstaion. Others have told me that I must have an agreement with them before I return and must protect myself. Based on their actions, this seems like good advice. I told them why should I give up my life and home and take a financial hit and put myself in such a precarious position for the same % of any inheritance that is left? They are not proposing anything and keep asking only for me to come up with an "estimate". They have been told that a live in caregiver is 125 per day and think that should be good enough for me but they don't have a clue about the real costs are in my opinion. That sounds easy enough but If I sell my home and take a loss how do I get compensated for that? Giving up my life, benefits and opportunity where I am not to mention friends and the fact I like the state. If I go only short term and get the livin caregiver it won't meet the SIL's approval and I'll have to be dealing with it remotely and drive myself crazy. They are so uninformed they don't even know what they don't know and are making alot of assumptions. The fact is I have been spending all my time since this happened and it's doubtful if I could put a price tag on it but hte more i hear them be concerned about me spending anything to compensate myself the more angry I get with them. While I wade thru the various online comments it seems that I am only going to get screwed no matter what I do. I'd move her in with me but it isn't possible due to space. She could possible qualify for VA assistance but only if the caregiver was qualified and going thru an agency which up's the costs. With the market down they think it isn't a good time to sell the house but for me to move over there I would have to sell mine and apparently that's ok that I loose my investment. They are worried about a caregiver stealing but don't seem to value my position. It’s hard to believe that my siblings would expect me to give up my life in my home in another state to move home and put myself in such a precarious position when they would not dream of doing. As soon as my mom passes away I can just see them serving the eviction papers to get out of the house so they can collect. With the housing market the way they as I’m not sure even if we’ve lowered the price of the house if it would sell settle my siblings feel my moving home would help protect that equity in the house but what about my home? I would have to continue to pay for it well I’m not even here. If I sell it I will be losing money due to the same market conditions. Now as her medicare days reach an end they are asking when I am going back. The current thought is just to get her home and delay my leaving I'm sure and let me wade thru all the details. I am frustrated and scared that I will get screwed by the time it is all said and done. Sorry I am rambling and repeating but it is all a mess for me now. I'm hoping someone out there will have some ideas for me I am at wit's end and afraid this is going to kill me. WHAT CAN I DO? WHERE CAN I TURN? HOW CAN I GET SOME HELP AND HONEST ANSWERS? |
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My 2 cents worth on Flagyl -- I've had to take that for diverticulitus flare up when they get serious along with Cipro. Flagyl makes me sooo sick to the stomach and leaves a terrible long after taste. I think that is some serious medication-----
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The other thing I read is that it can cause numbness or paresthesia of an extremity. so a 50/50 chance of noticing it wiht hte stoke already affecting her. |
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The Dannon Activia is probiotic - regular yogurt isn't; Gatorade can cause diarrhea. If she can tolerate milk, changing to soy might be a poor idea as soy stuff is NOT GOOD! Can prevent proper uptake of thyroid hormones and cause low thyroid levels. When I eliminated soy from Mom's diet, lo! and behold! She tested normal on her next thyroid levels and stopped needing medication!
Oh REALLY? Perhaps the doc is aware and perhaps the doc isn't aware!!! I suggest you call and discuss this directly with the doctor. http://www.drugs.com/pro/flagyl.html BTW, you have to request that the nurse write your concerns in the chart or your discussion will likely not reach the physician's attention! While this is a commonly prescribed med, it has a LOT of side effects and its effects on elderly folks can be more profound. Mom was on it once and had to stop after a few days as it was making her bonkers!! I have taken it and can personally vouch for how rough it is on the GI tract (NORMALLY, mine is as sensitive as Ol' Ironsides!!). Believe me, we DO understand how frustrating this all is for you! Stick to your guns and remember: the squeaky wheel gets the oil. Don't accept a "blow off" - make like a pit bull until you are satisfied that your concerns for your mom are being addressed. Besides that stepping back and counting to 10 stuff, please remember to BREATHE (dang it helps!!) and know that this isn't just happening to YOU - most of us have been through unbelievably trying issues with our LOs care and do truly empathize with you!! Hang in there!!  "She ain't heavy; she's my mother." |
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I have got yogurt added on her diet and asked a friend to get some probotic drinks. She does also have gatoraide I already brought. Today I hear she was "better" who knows if she really is or not - the CNA. I was looking at the affects and interactions of Flagyl and see 2 issues - seisures and coumidin! She's had a history of seisures and is on coumidin!!! I called the Nurse super and Dietary and questioned it's use. They said "the doctor is aware of the interactions but they don't always effect everyone but the mfg have to say that" They said she seems better today so we have to wait and see. WHAT A CRAP SHOOT! I also got them to change the PEG tube suppliment to a soy based away from milk so we will see. I tell you, this crap has totally paralized me - I can't seem to do anything but this. FAM issues are continuing. family, jezz out of control. I wish I had been an only child. I will be after this by choice. I am at wits end again. 1 step forward and 10 back every day! |
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HOW? With constant vigilance, luck and a lotta wear & tear on the caregiver's nerves! For the right and left hands to know what the other is doing is sadly the exception rather than the rule, IMHE! A probiotic drink or yogurt might be of assistance... sometimes meds get digestive systems all outta whack. If she can tolerate milk products, give this a try. I see you reported she's on flagyl - that stuff is some kinda hard on the GI tract!! Why is she on that? I'd suggest Googling information about all the meds she is on... including whatever stuff they are pushing through the PEG - not everyone can tolerate that stuff, either! "She ain't heavy; she's my mother." |
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Sad but true my dear...now you see why they get all huffy when a family member prefers to speak to one of us rather than a person with that list of letters after their name  Eh dont get me wrong Iv met a few that dont have an ego and are actually nice....I guess some of them forget what its like to be on the receiving end and WHO actually makes their job easier....I still remember the days when it was them that had to do all this work....Hmmmm now theres an idea   Hey do CNA's strike?! Hot dang! ********************************************** Well, butter my butt and call me a biscuit. |
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No sweetie thats the law they have to write EVERYTHING down Thanks for your comment. I wish all CNA's were as helpful as you. I am sure many, many are I know they are mostly overworked and underpaid. I found many to be as helpful as the Nurses and in some cases they knew more about Mom than the nurse. I wouldn't expect to find bad ones here posting away in there spare time either :-) Please check your private messages for more. |
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No sweetie thats the law they have to write EVERYTHING down thats what saves our proverbial butts when a family wants to say sue us YIKES You see Im a CNA I know LOL! I write EVERYTHING down up to and including poop how many times what I have fed a person drugs administered ROM exercises etc etc etc the list is long and detailed down to color of bowel and urine soft formed or hard....did I mention smell?! Or how many times I get pooped on or it lands in my hand  Oy a sense of humor with poop will wonders never cease! Ok heres what you do: Before mom gets discharged have her PCP order or is it the discharge staff? Someone step in I forget... this is the hazards of CG my love.... Anyhooo equipment usually commode wheelchair shower chair is paid by Medicare and will be delivered to the home by a medical supply co. *dont hold me to the shower chair though I think that is still a private purchase* In your moms case it might be ordered though try just for the heck of it and see what they say. Then find a Home care agency they will be able to set up everything with you over the phone. The issue here is who exactly is going to pay? Is it going to be from your moms finances or??? This is what you have to straighten out first. I would strongly suggest you be there to choose her CG's and please do use an agency do not go outside an hire someone who is not affiliated with an agency if you must get rid of a CG it can be done with a phone call. Try to get a primary CG you can trust as I explained to another member here long distance CG is possible as long as you have a CG to whom you trust. Im doing this right now with a daughter of a patient I care for, it works because she trusts me to keep her informed about not only her mom but my relief that comes in there after me I read their notes daily to her I keep her apprised of her moms health and or progress or decline. If her mom doesnt care for a particular relief she is informed of it and calls the office to request a change just like that  ********************************************** Well, butter my butt and call me a biscuit. |
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I tried again to have a family conference today and again, they are clueless as to what the facts are and don't even have time to want to discuss our options or offer me any support or help do any planning or investigation. As I mentioned, I am at wits end and know they will leave it all up to me. It's just too complicated for them I guess. When I talked about the cost of 24/7 caregiver thru an agency they say what about the 125 and I explained there are downsides to that. Someone needs to pay social security, a care manager has to schedule people and tey won't always be the same. And oh, when am I comming back? My brother hasn't even thought about what is necessary to even bring her home. I mentioned several things to him and nothing has been done. I couldn't even get her in the house at this point. She will need a wheel chair, bedside commode, her meds, products, someone inhome to help.... I think she might have a better chance with a one on one caregiver in her own home but I don't see myself getting any support or assistance from them and they don't seem to care if it bankrupts or kills me as long as they don't have to do anything or it doesn't keep them from ther own personal activities. Once I am there I won't b able to leave is my concern. How do I get them to get their heads out of the sand (or butts) and realize that I can not do all this alone? They will be the death of me and my Mom. It just may not be possible to bring her home. What can I do? How can I proceed? |
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cfoam, welcome to ECO. I wish I knew what to tell you that would be really helpful, but I am not really very good with your particular difficulties. As BG said, an elder care attorney could really earn his/her keep in your case, especially with trusts involved.
This I can tell you. I am Mom's primary CG, but I don't live with her. She does have 24/7. (I call it "Team Mama"). I am close enough to her that I can come and go several times a week, spend the night, shop for her, etc. It amounts to about 60 hours/ week. Bro has POA, but he really does take care of her finances (well, he manages the big stuff, transfers money to her checking from her holdings and I over see spending it. I am paid, but I am not single. Hub's job has our insurance and retirement covered. I could give up my job without much financial sacrifice. We did not have to give up our home. Would not have, and like you, Mom wouldn't fit in our house with us. Her private hire CGs get $160/day (breaks up into $90 for the overnite part-5pm to 10am, when Mom will be asleep from 10pm-8:30am, {2 times up during night to move, potty, and kept clean and dry} but the only duties are Momma care, and $70 for the day part, 10am-5pm, responsible for Mom's exercizes, bathing, laundry, and a lot of house keeping. Mom doesn't really need skilled care right now. Your Mom might. We started using an agency 2 days/week a year ago so that if I run off to join the circus, Bro won't have to flounder too badly. The agency charges $220/day for live in. They charge $16.50/hour otherwise. If Mom's care level required shifts, that's what it would be. Her house is much larger than one person needs, but it must all be heated, taxes paid, repairs to plumbing, electric, appliances, cable, phone, gas. That is not including food, meds, co-pays, incontinance supplies, maintaining her proper transport, clothing, yada,yada. I estimate that a good month with nothing unexpected we spend between 6,500 and 7,000/month. $5500 is for caregiving that does not include supplies. I don't know your part of the country, but unskilled, under the table, companion level care, is not likely to cut it. This "rehab" joint sounds like a snake pit. If she goes to a NH, she still will need an advocate and the sibs aren't up to it. Now you know who they really are and I am sorry. I urge you to get a full accounting of her financial matters, research NHs near YOUR home, and seriously consider the possibility of getting her POA and DPOA, and moving her to a NH near you. Rent out her home through a realtor (if Bro won't touch it), use the income to add to her support and hope that there is enough to see her through. I'll get back later with links unless someone beats me to it. This is just an opinion based on what I am hearing. Hijack your Mom, be an only child, and let those 'other' people be the orphans they seem to want to be. What are you giving up? Retirement?, Health insurance?, loss on your home?, friends? * the crystal ball (*) is in the shop>>>> |
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Wait honey I dont want to get all down in the dumps but I think Im going to have to in this case.
Your mom, is she alert and oriented? I hate to be so blunt but in order to continue on this path your temporarily on ask I must. Have you yourself spoken to her doctors? Is she getting any better? You say she may go on Hospice so this is end of life/making her comfortable thats what hospice is sweetie. As to the NH situation the Director of nursing is the person you speak to to clear all this mess up. On every shift the CNA's write down everything that they did for your mom the LVN's on staff that get your moms scripts also have to write down exact notes on your moms chart so from the time you asked anything of them till now *give specific dates* the DON can get a hold of all their nursing notes and find out whether or not your mom was given anything specific. But remember just because you ask for something to be given doesnt mean your moms going to get it. It has to be authorized by her PCP first as there may be an interaction their trying to avoid or it might not be whats best for her at the moment. If they are giving her a stool softener the reason for this is because she is bedridden and not ambulatory there's nothing worse then a bedridden patient getting impacted. This situation IS untenable as you so eloquently put it I think its time that you gather your siblings and lay the law on the table nevermind ole SIL shes got no say this isnt her mother its HIS. To place the burden at your feet alone is not only SELFISH its IMHO disgraceful, tell him to grow a set! your mom didnt turn her back on him when he was in need did she? Remind him of this would ya (((Hugs))) ********************************************** Well, butter my butt and call me a biscuit. |
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Oh God, thank you for answering. Yes, I realize it comes down to am I willing to and in many ways of course I am and have already "stepped up to the plate" I have as much told them already that there may not be a dime left when things are all said and done but does it mean I have to give up my life and finances too while they all make like ostriches?
I just can't belive that they care so little about Mom as well as me. My biggest concerns right now besides my ability to properly care for Mom is how long can I afford to go back continue to pay all my bills here and then once she is home and totally dependent on me, not be able to leave since they won't help. Right now there is no telling for how long and I just can't do that to myself. It isn't fair to me. The only other option right now is to tell my brother he will just have to place her in a home and liquidate the house. She has a feeding tube and isn't eating and my bro wants it out (until he learned they will keep her for 100 days) but he wants it out on day 99 so she either "sinks or swims" so do we go home to do hospice and of course it will be me there not him. If we go home and she gets better but still requires 24/7 care who manages it? The NH is completely messed up. She was doing fine until I made my reservations to come home and then developed the runs. Every shift I was asking for immodium and telling them she had the runs and they all acted like it was the first they heard. They did 2 stool samples and said they were giving her ammodium only to find out later they had not been. I caught my flight and have been on the phone with them ever since and just trying to get them to give her a bannana was impossible. "well the dietian was out for the holidays" Tonight my brother finally brought one over there and I told him not to leave until they got her weight. Lost 12 pounds since she went in. They say it is the tube feedings but she has had them since the stroke and didn't have the runs then. I called the supervisor and she said her weight was back at the same levels but since I just left 2 days ago I doubt it. The canned answer when I call "oh she is fine no change in her condition" I say you mean she is still loosingweight and having the runs? I get the supervisor then but when they look inthe charts no new information is there. They never write anything down and my brother is way too trusting. I told him even when I was there they weren't doing what they said they were and he just doesn't seem to get it. Here I am a few thousand miles away and it seems like an act of congress to get one dose of ammodium in her. Two days after I repotted her runs to the staff (each saying they didn't know) I asked to go over her meds to see that they were still giving her a stool softner after I had asked it to be discontinued. This situation is untenable! How do you survive these places? It is supposed to have good rehab but the nursing sucks! The right hand doesn't know what the left hand is doing!! This of course makes me want to get on a plane and go back but my fears above are that my life will self destruct in order to help her all while the SIL does NOTHING and my bro sleeps in his bed eveynight and goes on with his life in his home. How can I protect myself and my Mom? If she got a bit better I think she would sign over the POA to me but I'd guess my brother will just walk at that point so I don't know if it is a good idea. The way the trust is written every thing gets split and I am sure they will question any expenses I claim. (none to date) |
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Cfoam welcome in glad to have you.
First off Oy vey family huh? It sounds to me like your going to be needing the services of an Eldercare Atty. because it seems everyone thinks anything of value that belongs to your mom is theirs. Thats not the case it belongs to HER and if she needs these assets for her long term care then THATS EXACTLY where it goes to. Hand em a slab of velveeta an tell them to get over themselves I dont really give a good *od dam *an neither should you* what SIL has to say she doesnt have a say as far as Im concerned since she aint willin to STEP UP. Tell bro to relinquish the POA he has on mom and get one drawn up for you if thats what you want. Is this what you want hun? Do you want to take care of mom cause I think thats the real question here. But you shouldnt have to uproot your life if this isnt what you want. ********************************************** Well, butter my butt and call me a biscuit. |
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ElderCare Online The ElderCare Forum The ElderCare Forum New Caregiver's Meeting Room Please help, I'm lost on what to do and not getting help!
The ElderCare Forum The ElderCare Forum New Caregiver's Meeting Room Please help, I'm lost on what to do and not getting help!(c) 1997-2008 Prism Innovations, Inc. All Rights Reserved