Is there life after the nursing home for the caretaker?

Well mines there moved to lock down sister facility because had to hire agency aid to keep track of him, to keep him from going through the fire door. Now I'm limited how long can stay. Don't think facility dr. Is going to lay a hand on him. Overheard Dr. Say he threatened to sue if he treated him.
now get this this dr. went before judge and went against my turndown of med ... which ended up giving him fluid in his abdomen described as not in the lungs ."chf".
now je tell dr. he's going to sue ... so dr. says,"he's not my patient".
So guess the Dr. considers him competent enough to sue...?
Anyway they cann't get him to take meds nor to drink his Vital (peptides maintenance formula for maldigestion, malabsorption,malnutrition, failure to thrive from the hcv. Why he is in there. Proved 6 wks in hospital to prove it aleviates most of the pain (minus arthritis and new shoulder forearm replacement.)to make Oboma care pay for it out of hospital. Now he has it. Hes there because he snuck out at 2:40 am.
His encelopathy is stable. So the hep c messes w production of b vit immune system.and liver function, ending up most meds end up giving his halucinations and or dementia trying to go through liver or kidneys.
In hospital provedeven w kidney failure complete atrophy of one . The treatment with vital peptides fixed the single kidney function to functioning well best nephrologist could see.
(Ran onto friend whos brother is chemist used peptids on hep c malnutrition in Haiti owns patton on one of them. Been blessed in life whom I meet).
So now refusing med and Vital. They say well hes eating ( cannt digest with out the vital (also his abd and left pain hes had few years now quit).Add, he was just scoped while replaced g-tube presence of gastritis then gi dr (who knew him &removed previouly stage IIt colon polyp yr ago )increased Vital to high protein 30o/o. Letting him refuse Vital saying he has diet (mech soft just to give stool form to liquid diet) and wrote normal esophagus put to thin honey constincy liquids so could drink the hp Vital because nurse hadnt done her job he had been 36 hrs npo no IV fluids. So they are trying to make him drink pudding thick finally changed it to honey its still pudding thick to solid when he gets it. So he won't drink. A couple of nurses the kicker is the are float or agency have given him the Vital po. But their has since he came in been problem with refrigerator. Doesn't make things cold. By the time he gets a meal already w drink on it drinks warm. Back claiming now everything tastes like sh... I worry not just proff that hcv causing failure to thrive and aggrivating encelopathy malasia but causing cognitive deterioration and dementia. Main reason why I agreed to put him there. So we can properly apply for the Harvari HCV antiviral
To please him because he was trying to be nice to me. I told him if he obtained permission we could go across the street to checkers.
I gave permission for LOA with HCS which I am one of.
He went off on them. Other reason hes there no smoking renal hypertension and 4 in last 3 mo hospitalizations CHF, pneumonia,uti previous sister facility aid bought him 2 pks cig. This one they take him out smoking time he got cig.
Buses don't run near there Sundays and holidays so I didn't go back. Tomorrow his pulmonist appt. Hes had one clean up bath all month from aid yet same dirty gauze on his gtube from other facility dated 5/14 on at dr 5/16 not removed ( I said something 3 times) till I had nurse bring med in he refused ( that was part of the problem) that was 5/21 other than that I've cleaned him up other than that. Its harder on me with him there I just wanted them to cut the aid hours in half and pay me what can be done tbe 10.00 hr. That way I can afford to have someone come at night for a couple hrs so I can get some sleep btwn 3 and 5 am. But no Was told he could get better care. If it was t for me insisting he retain his drs who agreed hes too complicated to walk into and not seriously screw up.
I decided to take this as a break and get some sleep.
The dont have any of the meds hes suspose to be on they are awaiting rewrite of dr orders by their dr who said he's not his patient.
Now heres a mess for you.
No pulmonary meds has been on Advair other INH and nebulizers and nasal cort to stop the sheet of mucus down his throat ( and heavy mucus noted in his stomach) another issue speech thinking his coughing liquids when not giving him nasalcort before thick cold liquids to clear his sinus so he doesnt gag on the mucus sticking in his throat while hes trying to swallow.
This has been gone over and over HIS doctors ok him. Even wrote Rx Vital 2000ml/d may take p.o. 1000ml and 1000ml per g-tube. I got 800 ml p.o. down him being there 6 hrs. But Im with him the stuff taste is overpowering warm even iced which mostly turned down or don't have ice due to refrigerator. He rslefuses the feeding pump via g tube while hes sleeping he has dumping syndrome from mal absob dig diverticulosious and air ileus from his gut not being coated why pump continuious feed.
Sigh. Tired of starting over again and again. Going in circles.
Much can be done with nutrition and brain deterioration. Its been proven. He doesnt want to be there. One aid acused me of being the reason he acts up that Im doing something to him. Yea triming the mat out of his hair shaving his inch log beach with groom clippers changing his underwear bathing him appling ointment to his excoriated arse and hemroids.
So, I quit doc dictated he looked unkept poor hygeine.
Decided Im on break. If he's sent out to the Dr. In same clothes and undies hes had on for 5 days tomorrow Im sure he wont be changed from when I saw him friday. Same clothes I put on him Tuesday night so he would be dressed clean clothes for Dr. Wed am go to Dr.after lunch. Also they were to arrange transport I had to be firm I notified 2 wks prior.They had plenty of time appts were not going to be rescheduled. Nurse from different unit wednesday same one that changed gauze on gtube. Oh btw 1 1|2" raw around gtube stoma I couldnt take it anymore to see how long they were going to leave dressing 5/14 on; taken off 5/21.
Tried calling adm don. Just asked to return my call. No answer. Wrote day before dsg change concern re g tube dressing. No photography in facility. Took pic dr office Dr saw at 3 days said for them to change it. And wrote order for zinc wash only and dry drng dressing open to air. Orders sat there till 21 and they took the zinc wash to Rehab for dressing changes.
Im just going to document to CYA on me. Let it ride. Get him to these Drs. We are almost up to new Dr referrals working on pain mgmt and dr who dx failure to thrive hospital admission she's from health dept. Try for that HCV have to wait till after the 11th next mo. Other reason hes there didnt know he asked dr about glass wine. Well the wine someone else on his walk, I could always see him on side walk at benches he liked to sit watch kids at crossing then other end in shade when hot across from Eagles lodge live music was ok as long as he could see me . Id come ou to sidewalk every 30-45 min. Then someone nice I would join him. Then he was introduced to local sidewalk residents deviation maddog 30/30 5 oz. To make the pain go away. So we start over not eligible for Havarti sobriety 90 days. Before was waiting for finish of documentation immune supression bone marrow metabolic disorder due to presence of HCV. And clarification of wording failure to thrive to work and to get him on peptid bas formula to prove HCV is the cause acute chronic. Was done and proven with the turn around of the renal syndrome and failure. Now know kidney will hold as long as he is on Vital. But he's being allowed to refuse Vital. At hospital I sat at his side 24/7 to keep IVs in and attatched and gtube feeding Vital when started. Dr was good we were more cautious with tolerating amt it was 55ml hr befor gi dr turned it up 75. Its set for 85/hr maybe a little to much but at hospital he was absorbing 100 percent o risidual only other type fluid or food po showed as risidual.
Have the sucess afraid of going down hill again but that would just prove the Vital peptide necessary. Just dialysis is not acceptable. BTW PCP says 85 o/o problematic is HCV. Eliminate HCV and all other can be treated. Vital peptid is proving that. I Just wanted more results he was almost pain free execpt rib fx and shoulder replacement ached some. Even denied head ache.
Was thought much pain from nutrients being pulled from other body parts to support body function.

B&B was sort of a joke.
been operating as exclusive B&B with conciere service.
Guess could get a star rating from the get go. SURE WIN for 5, what you all think...

Agreed. No B&B

Becky.........too much work...............B & B??? Exhausted just "imagining" running a B & B.

M 8 8

Big old house . You overseer, caretaker , valet, server, cook? skills.
You alone.
Big Old Houses make Bed and Breakfasts.
Hey. Profession. Your an Eutanpaneer Inn Keeper in training.

Ok. I think I was addicted to the constant work involved. I had a caregiver that loved my Mom. She is like family and an Angel. My work did not suffer because she took such good care of my Mom. I came home early afternoon and we would discuss what she needed. She is having a hard time also, so she is going to visit her mother.
My Mother was a clothes horse so I hope cleaning her closets and drawers will be good projects. Thank you.

JtBuddy. It will go away and other things will begin to fill your life. It takes time but slowly you will develop interest in things. I am trying to keep busy with various little projects, and it helps me to make a list of what I want or need to do. I know my Mom would want me to move forward and do things and sometimes it is difficult, but even little accomplishments each day count and it takes time.

My Mother passed away and I have cared for her for 5 years. I am so lost right now. I have a 14 year old daughter, but she has a wonderful social life. My husband través all the time.
I work as a Speech asiste. So I have the summers free. I feel empty, lonely and sad. Will this go away?

It is going to take time and plenty of it. Just be patient, call him to see how he is doing offer to take him to lunch. It took me seven months after mom was moved to a facility after I had provided four years of care.

Thanks for the comment.
I am reading this after quite a while.
Making more sense, and I am not as agitated as when I wrote the previous entries.
Things do level off.
We have our highs and lows. I am getting used to it.

M88

I go through these kind of thoughts.Fear of the future, then tell myself to slow down. In 50 years it all will be over and won't matter anyhow, so I might as well stop worrying about it. I do feel so clueless and overwhelmed after Mom died, which I did not think would happen to me. The good thing was we moved across the street from my Mom and like our place and neighbors well enough.. It was very convenient when looking after Mom. The bad thing is...now that Mom has passed on I have to look at her place across the street. Our own place has a lot of bad memories with all we went through with Mom being bedridden here, and our own health and other problems, etc. Have been moving very slowly on getting things ready to sell Mom's. When we do move from our place someday as we can't yet, I will ask myself if I could stand living in the new place alone.
Mulata, I have heard people say that one should wait at least a year after someone dies to make any big changes. Some people say 2 years. I am trying to make small changes in the decorating here, painted a room a different brighter color, etc. I am thinking that since we can't move yet to try and build some nice memories somehow while in this place. I also don't want to pay a shrink or put that on the health insurance, though I could most likely use some help. I will figure it all out myself in time I hope. Sometimes time is the only thing that finally brings us the answers we seek.

I am terrified of being alone
Grand ma was that way
Mom is that way
I am too.
Scared of the unknown but very predictable future 99.9999% of the time.
Should I re marry if / when I am a widow. ?................
I have been married for almost 34 years. ?..............
Too much going through my head. I can only rest while I am asleep.
Thanks all for your patience
We are going through the pits together.
M88

OMG!
And some other advice not to make decisions about that for at least a year of living alone, bla bla... you guys think my shrink is a fool? I have to say, he balanced my meds where I am put together. Other than that, I think I can guess what he's going to say even b4 my appointment!
Thanks again for your time and support!
M88

Lassie, such good advice. I was relating to Sibling's brother. He is living in his parents' house that requires so much work. Mother is gone now, so all there is is a house that he is trying to cobble together and getting resistance from his sister. Maybe it's time to take a bulldozer and push that house to the ground... or at least sell the house. How can we start life again when we're in the same old place that isn't even OUR place. I think we each have to be ourselves when it's all over and not just a continuation of our sick parent. It may be convenient to stay in our parents' house, but it could certainly be depressing -- particularly if there is a lifetime worth of work that needs to be done to it.

Mulata88, when the time comes, you should sell the 'big old house'. That is the best advice I can give you. Don't stay there brooding like Miss Haversham in Great Expectations, move on. Find a job when you're ready. It will be a big big change should it ever come to that, but new surroundings and keeping busy will help. God bless you.

Mulata your psychiatrist is an idiot! I certainly wouldn't go back there. Sometimes the answers are within us. Start looking at want ads and get a feel for what work might be available to you when time comes. That way you will have a plan that will ease your mind. If you live in a city consider moving away when time comes to somewhere where the living is much cheaper.

When my time came I moved to a tiny cottage on an acre in the middle of nowhere. Land taxes are 1/4 of the city, I run a wood stove a lot to keep electric bills down, grow and can veggies and keep chickens. My living expenses are a fraction of what hey were in the city.

I asked my psychiatrist at one visit... WHAT AM I GOING TO DO WHEN MY HUSBAND (18 YRS OLDER THAN ME) AND MY MOM DIE AND I AM ALL ALONE IN THIS BIG OLD HOUSE?????????????? YES, I WAS LOSING IT AND QUIETLY YELLING AT THE M.D.
He said: "What did you do before you became a caregiver?"
I said: "I USED TO GO TO WORK AT 7:25AM AND GET HOME AT 5:30PM".
He said: "You will do that again".
I was stumped.............silent.............confused............alarmed..............Huh?!?!?!?! There will be life for me without them? He said: Yes.
End of appointment, keep taking your meds, see you in 2 months.........................
Any comments folks?
M88

After a year and a half of mot working I have nothing if My Dad goes into a nursing home I'll be broke without a car. I'm in bad need of dental care and will probably be on foot and homeless pretty quick. I though I had good savings decent job and car but after a year and a half car is broke down money and job are gone. I'm sure others are in the same boat.

I totally agree with the comment "like living next to a fire station" always on alert and on edge. My mother was in a NH for three years and still there was no peace, constantly running, checking the phone for messages and jumping out of my skin when the phone did ring. Due to the stress my hair was falling out in big chunks. She passed 6 months ago and I'm only now getting back to living. It just takes time.

One more observation: caregiving is an extremely stressful job, you're on the alert all the time, you hear and see appalling/sad things, you are angry/worn out/isolated, and worry all the time about the health of your loved one, about money, a million things. It's like living next to a fire station. Then your loved one goes into a NH or AL, you can relax some now! But you are still in that alert/worry mode. It's not so easy to turn off and settle down into 'normal', any more than it is easy to go from a normal life into the high stress job of caregiver.

I am now in this position but instead of being in a nursing home my Mom passed on in January after I cared for her in my home for nearly 2 years while she was bedridden. I thought I would have it all together and do all kinds of things after my caregiving time ended. I did go for a vacation and that relaxed me for a couple weeks later...but now I feel lost and clueless as to what to do. I also miss my Mom though I know she had no quality of life being bedridden with all her health problems had she lived longer. I have her home to finish taking care of and that is harder than I thought it would all be. It sounds like your brother is depressed too. I don't have much interest in things right now. I keep trying to find things but it is not easy. Maybe doing some sort of volunteer work or just making oneself go to a museum, library, or sporting event can start the healing process. Sometimes I think I just I need someone with an A type personality to pull me out of this. Does your brother have any friends that have any hobbies or could go to sporting events with him?

Good question! When I put my mother in a nursing home, I was so relieved. I went on a short vacation nearby at a nice hotel, and just slept and slept, and ate and read, drank wine, watched movies, and slept some more. I had no problems adjusting, really - there was always SOMETHING coming along. Legal things, Medicaid things, the house - what to do about the house. Mom needs more clothes (they went out in the laundry and got 'lost'), mom needs shoes (they got 'stolen'), mom needs dollar store reading glasses, hair elastics, socks, stuffed animals, magazines. Mom has medical issues, got to see to that. Got to go bring people to visit mom. There's always something, believe me! On one hand, there is a period of 'OK, what do I do with all that time now?' On the other, there is that realization 'hey, you only have a few short years before YOU get sick, before YOU get dementia' - so you try to make the most of it....I don't know what brother's issues are, but it sounds like he needs a psychiatrist, he sounds deeply depressed... Can he go visit mom? He could go see her every day if he wants. Or he could volunteer at the NH, if he's not working and his days are long. NH's welcome volunteers and visitors, some patients there never get any visitors at all. (I will say, I often wish I had grandchildren or dogs to bring up to visit when I go see mom. It's so sad when children and pets come into the day room to visit, it perks up the people there so very much. Even if they don't even know where they are they love to see babies and dogs. It can break your heart.)

This is one of the pitfalls of caregiving that no one talks about. Our whole lives can become dependent upon that person we care for. It's difficult to maintain our own lives while caregiving and slowly but surely the person we care for and their needs can take over our life. Some of us recognize it as it's happening, some of us don't. I saw it happening in my own life and kicked and screamed the whole way.

Your brother's life revolved around your mom and now she's being cared for somewhere else by someone else. This has left a huge gaping hole in your brother's life. When people get to this point it's very difficult to know what to do. Since your brother is feeling the emptiness so profoundly I would suggest that he see a therapist so he can get some tools to rebuild his life. He sounds very depressed.

Start planning for the rest of his life, whether it's going back to school, finding a different job, taking up a challenging recreation, doing something he's wanted to do ever since he's been a child.

It's easy to become trapped in the "here and now" of caregiving, but there will be a time when this is over. Daydreaming and planning can help relieve the tension and frustration as well as give him something to look forward to.

What are or were his interests before becoming a caregiver? Resurrect them, even if it's just participating on a forum with others who share the same interest.

And, he will eventually have the time back to himself.