Frustrated. I can't do this

Lgw

Today I just feel like I can't do this anymore. My loved one had another bout of diahrea.  He just acts like it is normal life and I guess I have to face that it is. Thank heavens he made the change to disposable underwear. He does this and then when we go to the doctor he tells them he is fine and has no problems.  They diagnosed him with mixed, Alzheimer's and Vascular. I am pretty sure the Vascular is the major problem. I know things are going to get worse but right now I just want to scream and cry.  My son just wants to put him in a home . I realize we are not there yet. Today he fell and I am getting way to good at talking him thru the steps to get up. Thank heavens I found a YouTube to help me. There is no way I can physically help him up.  Sorry I just needed to pout and feel sorry for myself. Wow that is selfish.  I know others are going through so much worse.  Please forgive me.

Cynbar

Vent away! Every one of us has days like that, I know I do. This forum is a safe place to get everything off our chests ----- people in our regular life just don't get it and grow tired of hearing about it, no matter how polite and supportive they are. You came to the right place, hope it helped.

loveskitties

Lgw wrote:

  My son just wants to put him in a home . I realize we are not there yet. 

My heart is with you.  

Please just clarify for me.  When you say "son just" is there more to that story than him wanting what is best for you both?  Perhaps he sees what it is doing to your health and well being.

You say "we are not there yet".  Just what my mother said the other day about my dad.  Please be aware that getting into a place you would approve of and can afford is not an easy task.  I live in an area where I had over a dozen places to check out and found extensive waiting lists, some insist you "age in" to memory care from their other care options, and some will not take dementia patients who are beyond a certain level of care needs.

Waiting for a crisis or until you absolutely can't do it any more, may actually be too late.

If it is one thing I have learned in this process, best to at least check out your options and what the limitations of the facilities are BEFORE you think you need them.

The other benefit, is that it may bring you some peace of mind to have a plan in place for when you do need to make the change.

Ed1937

Lgw wrote:

He does this and then when we go to the doctor he tells them he is fine and has no problems.  

Is this an ongoing problem? If so, the doc needs to know about it. You can always send a note for him/her to read before seeing him. If it's not ongoing, you still have every right to vent. Just putting it in type can make you feel just a little better. Sorry you are dealing with this.

Bhopper

In the past five years I’ve had so many days that I thought I couldn’t do it one more day I fully understand and you vent scream holler whatever you need to do to get through this one and then decide what you’re going to do tomorrow and whatever it is it will be the right thing

Iris L.

Lgw wrote:

 when we go to the doctor he tells them he is fine and has no problems.  

This is the definition of anosognosia.  If you are expecting something different, you will constantly be disappointed.  

Iris L.

Lgw

THanks so much! You gave me a lot to think about it! I had not looked at it from that point of view.

Lgw

I would say ongoing.  I asked the gp  about taking 2-3 Imodium a day and he shrugged and said he could take up to 8 a day before we would worry about it.  I forgot to ask his memory doctor.  It is at the top of my list next time.

Buggsroo

I can really relate to this.

I often think I can’t do this anymore. My husband had prostate cancer so had radiation treatment. It damaged his colon so there are many accidents. He often will foul his bed and then hides it rom me. We don’t sleep together because he loves a hot stuffy room, I like mine like a fridge. I usually find the soiled sheets by smell as well as soiled underwear. He gets mad if I mention it. He also eats ice cream and drinks diet ginger ale, up to six cans a day. I feel like I live on skid row, cans piled up like dead soldiers on the counter.

If I say anything I get showered in abuse and asked if I am off my meds. Then he will come back in a few minutes and tells me he loves me, I am still grinding my teeth from the previous episode. 

Please don’t feel bad about venting, it is normal. I understand about feeling overwhelmed by sh-- everywhere, sometimes I do the silent scream in the basement. I have an appt with a social worker and will start getting my name in various care facilities.

I wish you calm, but perhaps your son has a point.

CS 63

My HWD had a few days of diarrhea.  He was upset about it so I called the Dr. 

She recommended Metamucil and we tried it.  Fixed him up right away, maybe a coincidence?  He took it for a couple of weeks and then stopped, but I have it on hand if it happens again. 

Jo C.

That really is an exhausting challenge; I am sorry.

 If diarrhea is a problem and continues on and on as diarrhea, it may well be a good thing to ask the doctor for a lab order for stool cultures. Lab will give you the small containers. Sometimes there will be an organism at fault, so it would be worth checking it out.

J.

rockfarmerswife

diarrhea can often be controlled with added fiber in the diet.  Metamucil is good, if you can get them to drink it.  Citracel doesn't get as thick, and can be placed in a drink of choice (without them knowing, if necessary). Just don't overdo it with the fiber, as it can become a problem with constipation, and need to make sure drinking plenty of fluid.

 Also, if the diarrhea is really foul, blood-tinged or mucousy you really should have tests for infectious sources (like c difficile if LO has been on antibiotics recently).  Sometimes planned toileting can help (think potty training your toddler, and recommend toileting every 2 hours or so). 

Sorry, the nurse practioner in me is showing through!

Jo C.

C. diff is no joke; it can be deadly and is very contagious.   If there is chronic diarrhea, it is a good idea to have the doctor order stool cultures.   DO NOT take Immodium without the doctor being asked about C. diff and stool culture and the MD giving the okay to use Immodium.  If your LO should have C. difficile, it is strongly contraindicated to take anything like Immodium as it could cause severe outcome problems.

As for C. diff; one can have it withnout having any bleeding and even without mucous; (though mucous is common.) 

How does one get C. diff?  Either by having been on an antibiotic within the last few months or so; where the abx wipe out the good flora in the gut and the C. diff takes over; OR by having been in  hospital or NH either as a patient or even as a visitor over the last few months or so.  One can pick up C. diff off many surfaces including fabric and light switches and door knobs, railings, pretty much anything.

It is sad that community acquired C. diff is becoming more common; no known exposure, but it still happens. Pregnant women seem to be very susceptible.

PLEASE, please have this discussion with the doctor.  And no Immodium without having it checked out and the doctor orders otherwise. Do not wait to call the doctor; he/she needs to know this asap.  You may have to request having stool samples done.  I have an excellent Internal Med MD; but he more or less just said, take Immodium; it was me that insisted on getting an order for a stool workup and so glad that was done.

NOTE:  If C. diff is present, it is important to know that is is a spore; not a bacteria or virus. .  It is very hard to kill.   It stunned me to learn that the cleaning supplies we get over the counter in the market do NOT kill C. diff - so our Clorox wipes, our Lysol sprays, and even our Purell is of no use.   One can use one part bleach to nine parts water for cleaning; that is effective to kill the spores..   Most medical staff are not aware of this; it is a surprise to them too. Precaution with bed linens and towels protecting yourself and not setting those items down on other surfaces such as the floor, etc. Get it into the washer right away and use bleach on the items if they can be bleached. 

It is about thorough, thorough hand washing done frequently, and it is about getting the cleaning supplies that are EPA tested for killing C. diff. if you do not wish to use the bleach and water mix.   Clorox does make that sort of product.  If you wear gloves which is helpful, still wash hands frequently for a good length of time and be sure you wash up and over the wrists and even the spaces between the fingers.   

There is also a C. diff diet to stick to, and medication that must be taken.  It is usually treated with either a course of Flagyl or a course of Vancomycin.  Sometimes a physician will order Florastor to take along with the Flagyl or Vancomycin; but let the doctor make that call.

Why am I on top of this?  Sadly and shockingly, I recently got C. diff.    I had two possible routes of exposure. One was being given antibiotics.  The other was that I had a short stay in an acute hospital.   With my symptoms, there was no bleeding and no overt other issues; just the terrible diarrhea.

As an RN, I was shocked to learn that ordinary cleaning supplies such as the Clorox and Lysol and hand sanitizer was of no value at all with C. diff.

When there is C. diff; one has to clean the bathroom and bedroom and all areas the person is in contact with to the nth degree with the approved products.  It is a HUGE cleaning procss.  Countertops, light switches, door knobs, showers, floors, all surfaces; those spores really get around.

If there is C. difficile, use Google to find out  HOW to clean and also how to protect yourself.  May not be C. diff that your LO has, but since it can be deadly or cause need for surgery, it is best to have that ruled out.  Also, when a stool workup is done,they check for all organisms; even those from food exposure; at least  then one knows what one is or is not dealing with.

J.

DrinaJGB

I think it is safe to say we have all been where you are at one time or another. I recall going into my closet to scream into my pillow after weeks of no sleep because of accidents in bed and nighttime hallucinations.  There is nothing more sobering than having barely nodded off from sheer exhaustion only to be awaken by screaming of spouse stating"HE'S IN THE HOUSE WITH A SHOTGUN!!!!".

You are only human and your feelings are completely justified.

Lgw

I need help. My LO just accused me of making up his diagnosis because nothing is wrong with him. I made it up so he couldn't drive, and I locked his guns away from him. He swears the doctor said he was fine and nothing is wrong with him. He claims I made up the stories I told them. I asked why he thought I could possibly gain from having to do everything on my own. It hurt so much that he thought I would do that to him.  Is this the paranoia I have heard about?  I have the Dr on tape so the kids would have as much information as I do. He didn't want to hear it. Should I play it for him anyway or just wait as I know he won't remember it?

Ed1937

Lgw, your husband has anosognosia. That is the inability to understand that there is any kind of problem. His damaged brain will not allow him to realize there is a problem. There is nothing you or he can do about it. If you show him proof of his condition, he will not believe it. It doesn't matter how much proof you have. The doctor is a quack, they got his records mixed up with someone else's, etc.

Ed1937

Lgw wrote:

He does this and then when we go to the doctor he tells them he is fine and has no problems.  

It is important for the doctor to know what is happening. You can write a note to the doctor to read before he/she sees him. Explain everything that concerns you. You can give the note to someone at the desk, and ask that the doctor reads it prior to seeing him. Or you can mail something to him/her pertaining to the issues you see. Or maybe you can get into the patient portal, and leave a message for the doctor. Even if you don't have POA, you can still tell the doctor about it. Information can be submitted to the doctor, but without his consent or POA, the doctor will not be able to give you information on him. Information becomes a one way street. But the important thing is that the doctor does get the information. I'm sorry it is so hard for you.