the MIA's

[Jo6]

Let see, there's Servant, Karenrn, brite23, Joy, Jennifer and Jaycee. If I have missed anybody, put your name up here so we can see you:p

We have missed many of you and wonding how you are. Drop us a line and let us know how you are, LO as well as yourself.

There are many that come just to spread sushine and help out with questions. Tootsie is on top of that list. There are others and I appreciate all the other that drop by.

My MIL is making a little progress with her eating, if you want to call it that. She can have nothing any thicker than honey. They have to watch her very close while feeding her. She has lost so much weight. I know we are just marking time, but it is so sad to see.

Let us all check in , let us know how everybody is. Take Care all, Jo

[rumpled]

Hello...
Sorry to hear about your MIL...
My MIL is having up and down days - sometimes getting out of bed, other times refusing and very confused. She is so tilted over to one side that my FIL has a hard time feeding her. This at least forced him to get evening help. No stroke - no one has any idea why she is leaning like this.
Hope all is well with everyone. Take care.

[Tootsie]

Jennifer, I have an idea or two about why your MIL is tilted over. First of all, I hope that SOMEONE is doing a physical assessment on her at least monthly. By that, I mean, looking at, and in, every crevice and crack in her body, to make sure she isn't harboring some infection, rash, or other malady. She might tilt her body to avoid pain.

The other thing I wonder about is her sense of balance. I think that my mother fell and broke her hip because of balancing problems. It stands to reason, that as brain impairment advances, all those things that keep us balanced can also be affected.

The woman who owned the residential care home where my mother spent her last year, did physical assessments once a month on everyone living there. She took blood pressure, checked scalp, looked between toes, lifted sagging breasts, spread legs, etc. etc. I found it very reassuring to know that she was actively trying to avoid problems for my mom. Cheerio.

[rumpled]

Thanks Tootsie!
No. No one is doing a thorough or ongoing assessment. Her bedsore got pretty progressed which was on her hip in plain site. Even though the aide washes her every day, my FIL is so... er... set in his ways and so strongly aggressive [read: nasty] if the aide or anyone questions him about what is being done that one must pretty much tippy toe around issues. The aide that will only wash her with a cloth is fine with him - so she never gets washed in a bath - so she is never washed thoroughly. My husband thinks the cloth is sufficient and I think he is nuts.
She is blind and for sure her balance is off. She pretty much sits in the same position all the time and is at risk for another pressure sore. She cannot move herself anymore. She does not walk well at all. FIL thinks all is well but at times now he is at least starting to think he needs more help. The case manager thinks she needs to be in a good home with way way more care... but alas. I just keep away.

[rumpled]

My MIL is in the ICU now, with pneumonia. She may make it, she may not. Since she does not have an advanced directive, now decicisions have to be made in the heat of the emotions. Right now they are just keeping her comfortable and on antibiotics and are assisting her breathing. But soon the questions are going to arise and FIL is not going to be prepared. All so upsetting. I will have to make my poor frozen shoulders go further and go see her tomorrow. The hospital she is in is about a 40min drive.

[Jo6]

Jennifer, I am so sorry your MIL is in ICU. Maybe she will get the help she needs there. It's too bad it had to come to this. You must not do yourself in though. No matter what happens with MIL, you Have got to take care of yourself.

I will remember her in my prayers. For you also unless you would rather me not. You can tell me, I won't be offended. Some people just don't like you to say you you will pray for them.

Again, please keep us posted about MIL, but also your health. Julia

[rumpled]

Prayers do not offend me... we all appreciate them. Thank you.
She has a picc line, feeding tube and is on a ventilator... not a good situation.
My FIL, when asked, wants her to get better, so it is going to get hard to take stuff away. He thought she got the pneumonia from a bath, not from inactivity or they think, inhaled food. Not sure how much he understands. I tried to explain about dementia and how she will likely not get better and even if she does, er, leave the hospital, it will not be in a good state, his face closed up and his arms crossed. He just is not ready to face it.
I spoke to her, stroked her hair and shoulders and tried to get them to talk to her and touch her too... they do not think a person in that state hears them but I told them she knows and to talk to her.
Her kidneys are not in good shape so not sure if it will be a matter of them making decisions or if they are going to give out.

[Tootsie]

Jennifer, I am so sorry that your MIL has deteriorated so badly without sufficient attention to how her medical care will be managed. It always sounds so trite and condescending to say that it is for the best. By "best", I mean that kidney failure might make any other decision unnecessary.

I am glad that she has had the comfort of you being near by and feeling your touch. It may be the last thing that she recognizes and has cognitive awareness of. I am sure that the next few days will be very difficult on many fronts.
Courage! We all will be thinking of you and asking for that strength that comes when needed. Cheerio.

[rumpled]

She is breathing on her own but totally unresponsive off sedation. I spoke to her PCP who said she could have passed peacefully on Monday had there been no intervention. Now she will have to be on a feeding tube, in hospice, a lot of care. She is in still bad shape but FIL happy she is alive but she is still dying, but now just taking a lot longer. Ugh.

[joy]

woops. sorry I did not catch that MIA. I need to check in here more often. I do appreciate this forum and don't want it to ever not be here for those that need it so I will make a better effort to stop by.

I hate to hear that things are worse for your mil jennifer. It is sad when they deteroiate like that and don't improve at all. I see that you said your mil is eating some Jo so that is a good thing. One of our young men at church just lost a great aunt last week. He felt like she was more of a grandmother as she had helped raise him. She had been blind for years and had gotten to live at home still even after the 90 year age mark. They had to put her in a nursing home just than 1/2 mile away (it was the same one that my mother was destined for, a dreary place really). I don't know the reasons but they had withdrew food for some reason and thankfully she did not last long.

Of all the support places in this place I think this forum is needed as much if not more than most. I think that those that keep it going have been doing a wonderful job and I want to thank them myself for staying with it.

[Tootsie]

End of life situations are never easy and are frequently very complicated. I am so sorry that you, Jennifer, will have to deal with this during the coming holiday season. That makes it all the worse, in my opinion, simply because you are then so susceptible to the depression called, "anniversary syndrome," where you associate all the holiday sights and sounds with the sorrow of a loved one dying.

It reminds me of the situation with my own MIL. She never had any form of dementia and was sharp and responsive to the moment she died. However, she did have leukemia. Her daughter could no longer cope with her, so my husband arranged to fly with her to our part of the US, and have her immediately admitted to a nursing home. Because of her diagnosis, my husband knew that she could not live long, but did want our children to have some experience in knowing her. Visits had been few and far between over the years due to distance and money.

We arranged for blood transfusions to alleviate her symptoms. Then came the holidays, and we again had her transfused. Winter break when we took a snow vacation came next. Finally, the doctor warned us, that she still could develop a massive infection, that would require isolation, antibiotics and a really miserable final episode.

She never did accept my husband's patient and careful explanations of her diagnosis and the problem with repeated transfusions. Finally, she just slipped away, but had eaten lunch and been up to the bathroom earlier in the day.
My husband had gone to eat lunch with her daily, as he worked just 5 minutes away from the nursing home.

I'm not sure if this account is of any help, but I did want to demonstrate that we all have postponed that final event, for a number of reasons. Cheerio.

[rumpled]

Well, the nurse explained that while she is somewhat "breathing on her own", she is still on the vent. And that when they remove it, she will either die immediately, or live shortly. The question for the family is to re-tube her if need be or to just make her comfortable. My FIL and hubby have to decide on Monday and I will not be there. She is completely non-responsive but my FIL so wants to take her home - but he cannot take her home on a vent and he does not understand that his home (and temperment) is not suited for 24 hour care and that much equipment but not sure reason is going to play into this.
For sure, my hubby knows this is not what she wanted, but he it ignoring her wishes and that just kills me. For I am not healthy and so that means he will ignore my wishes as well. I told him for his dad, we can keep on all the vents and tubes when it is his time as that is clearly what his dad wants - but that is not what his mom wanted and he is not being true to his mom. I hope she kicks his butt on the other side.

[Jo6]

is such a loving, caring enouth to do what you did. I can apprec. all that you said.

Jennifer, I am so very sorry things have come down to this. Sometimes it IS up to family and family get into such nasty sences. Yes, this is what the Patient's advocate needs to take over. Oh course that is awful for patient as well as family member. FIL had GOT to know he is not able to do what he says he will do.

I don't know your state, but in SC they have laws and and they try to enlighten the LO that has a hard time excepting what they are up against.

If he takes her home, well I just can not imagine.I'll send prayers your way tomorrow. You try to get rest, you are going to need it. Sometimes we are so drained with the stress of it all it will do you in. Just you take care of you. I pray you are getting rest at this point

my love, Jo

[Jo6]

Joy, I do apreciate you coming back and explaining the situation with you. As you see, we need all the help we can get. You are such a dear. We need "cheer learders", you sound like a mighty good one:p Thank you for the love and care that you have left here more than once. Some people don't ever forget the goodness of life. you are a real fine lady and I'm proud you have given to this forum. thank you dear Joy, Jo

[rumpled]

Yes, thank you for your story... I am too wrapped up in myself and neglected to thank you... sorry.
They have her on anti-anxiety meds now. She is shaking and very unhappy, much like she was at home in a panic mode. The meds are keeping her vitals steady but you can tell she is not in a good way but as she grasped at our hands if we put our hand in hers, my poor FIL took this as, well, a sign that she is more there than I would think she really is as she is not responding to commands at all. They meet with the GP tomorrow and his questions well, told us he still does not understand that dementia is fatal and that he would like her home. It has been explained several times but he is not getting it.

[Tootsie]

Jennifer, I'm glad that you will not be present during the discussion with the GP about your MIL's care. It seems that you have had little influence in the past, are unlikely to have any currently, and the whole episode will only be upsetting and frustrating for you. The entire situation will play out in some form, and whatever regrets there are, will not be yours. You have done all that you could.

However, for your own situation, I do hope that you have had good legal advice and followed your state law in deciding about your own care. Every state has it's own requirements as to what is legally enforceable in end of life decisions. A legal document, notarized and witnessed by 2 persons is likely to be upheld in any court. It is still best to consult a local attorney. Be sure that your doctor/or doctors, as the case may be, know of your wishes, and have a copy of this document in their files.

My mother had surgery for a fractured hip, while she had Alzheimer's Disease. Years before, she had been successfully resuscitated from a cardiac arrest in a drug store. She told me, and everyone else, that she didn't want that done again, under any circumstances. We had a Durable Power of Attorney for Health Care, witnessed by our minister, and the woman who ran the Senior Citizen group at church, indicating her wishes. After she went to the recovery room, the surgeon called me, from there, to the phone and asked again about resuscitation. The reason,was that if she was not to be resuscitated, there was no reason to keep, her in the recovery room, and the central line to her veins open. He was being challenged by the anesthetist, as she was recovering well. I told him in no uncertain terms that my mother had been adamant about her wishes and I had no desire to change them. They brought here back to her room.

Three weeks later she developed a urinary tract infection and the toxicity from the treatment was too much for her weakened heart and she died quietly in the nursing home. We had been making plans to move her back to the residential home where she had lived.

My point here, is that even professionals may challenge any decision that you have indicated, if it is not in writing and legally enforceable. Cheerio.

[rumpled]

Well... it has been an adventure.
Norma, like your mother, did not want heroic measures. But her husband has always wanted them for himself so that disconnect is where the non-written directive gets to be a real mess. The doctor again explained to him that her condition is dire and my hubby reminded him that she did not want these measures. He wanted to consult a priest as he felt he was killing her to remove the vent.
We at first got the one from the hospital but er, he was not um, sure with the man's nationality that he was catholic plus he is very confused that all the hospital staff are chaplains and right away pretty much starting screaming that the man was not a Catholic. He was just a Chaplain. We tried to explain that all the clergy that work at the hospital are called chaplains but he was all twitchy and could not understand the man had his own church. Things calmed for a while and he counseled him and then he actually said that the vent was artificial and that he can remove it. FIL got all upset again, accused him again of not being Catholic or ROMAN Catholic and it was quite a scene. We tried to get him to realize that it is the disease killing her, not him but he would not have it.
Ironically, he consulted a priest the next morning (there was a deadline as the vent is tearing up her mouth and throat) and he says the exact same thing...er... and he was ok as this man has blue eyes we figure??? Anyway, she got her last rites, and now she is on DNR, will not be re-tubed and is on her way to starving to death. She is moaning and grunting, saying/shouting incoherent sentences... some you can just make out like she wants to go to the bathroom, mother, she wants tea. So sad that she is brought back just to die a worse death IMHO? FIL is all smiles... UGH. The rest of us are miserable.
Lucky for us he did not hear that the last priest is a chaplain too. I bet he wondered why we all shook our heads at him when he said he was! ACK!!!!

[joy]

Jennifer I am so sorry that it has happened this way. Just know that you have done all that you can do and never look back please.

please continue posting here so we will know how you are doing. i understand that you are not in the best of health either. even though your mother in law will pass on, there is no reason that you can't continue to stay in touch with us. i find that even now, years later, i still need the help of others fairly often. and there is always someone here to give me the help or comforting words that i need.

[rumpled]

Well, she is incoherent really... just screaming out names (poor roomie!). The pallative care people want a decision NOW on the permanent feeding tube...so my hubby and FIL are taking a few days to mull it over (*groan*). I really appreciate being able to vent here because I don't know sometimes whether to laugh or cry or what!!!

Yes, my tests came back abnormal and I have either MG or "primary muscle disease" and I don't know what that means. It just sounds ominous.

Oh I will have to stay here - after all, my FIL has dementia, right? *grin*

[Jo6]

I hope things have at least settled a bit for you as well your MIL. Of course FIL and hubby. It's been a long and stressful time in your life. I don't know anything about you're disease, but I was wondering if it can be treated? I know some things simply don't have a cure, just something to help with the pain. I pray things will get better for you very soon. Jo

[rumpled]

Thanks. MIL is calm but has MRSA. She is to be discharged but er, guess who did not plan ahead... [waiting] ah yes... so now during the holiday, we are trying to find 24 hour homecare. Funny how that is not going well? So we have cancelled thanksgiving.
She is not getting the feeding tube - she is going to go home and try to get fed by my FIL. Which, by the way, is how she got the pnuemonia the last time.
As for me, I have not a clue what I have yet so er, yes to the pain part, and man, I sure hope it is not one of them fatal ones but who the heck knows at this time. ALS has hit two others in my family so just wondering, doc is not saying anything at this time. He wants all data in.
I hope y'all have a nice turkey day!!!

[joy]

Jennifer my heart sank when I saw you had posted. I know that sounds awful but really, I just knew that there could be no good news right now.

I know you understand my saying this. It would have been, she has passed away or in my opinion worse, what you did have to report!! That is bad choice either way. The poor woman has been through enough and the ones that really know what is going on have been put through the emotional wringer as well.

I'll not say I hope you have a Happy Thanksgiving as it will be just impossible. But I can say that I do hope that it is as stress free as possible under the circumstances. And that you can find some quiet time to reflect back on the better days that you shared with your MIL.

I hope the passing that surely will come, comes soon. Way back when my daddy had cancer and was dying, I did not understand why people said things like this to me. But I understand all too well now. Forgive me if I've said anything that upset you more than you already are.

Please continue posting so we can kinda know how you are doing. I am glad that your doctor is not speculating on any certain name for your illness. It could be any number of things and I hope your mind is not racing away trying to figure it out. Time enough for that when all the facts are in. For me, dealing with the unknowns for any length of time, is the hardest thing to do.

You and your family will be in my thoughts and prayers.

[rumpled]

I think they are going to move her to a home temporarily if an opening comes up as no help can be found over the holidays. Hubby has asked me to help him arrange her funeral services. To me, lingering is not good but not sure if FIL and hubby feel the same. I am a realist and I think you have picked that up by my posts and I hope I face my own situation with grace.
I have to wait for the MRSA tests to come back before I can go see her as my system is the most repressed (ACK). They say she is clear now.
We shall see... I hope every does enjoy the holidays. We had a light dusting of snow yesterday and that was fun. Enjoy! Thanks, Joy.

[Jo6]

Jennifer, be very careful with your own health. When you said she was going home I about had a heart attack. Disaster was all I could think of.

I had had to be careful about going to the NH. I have an open wound on my leg where the Dr. did a biopsy of some strang thing that looked like I had been bitten by a huge spider. I keep it covered when I am out.

Good luck in finding MIL a place to go. my brother Ben was taken to a Hospice house that was run by the hospital he was in. It was a beautiful place, it looked like a home. there was a small patio with chairs, it was just so nice. Too bad Ben didn't get to be there less than a week. It sure did help my SIL. Maybe they will find something like that. I hope so.

Happy Thanksgiving to all of you. Joy, Tootsie and all the other that come around. Have a happy and safe holiday. We'll all manage, won't we? We have each other. for that I am grateful.
all my love, Jo aka Julia

[joy]

It is very important to keep taking care of yourself as best you can. I think (or hope) that just being clean enough with the hand washing etc. will be enough to keep you from harm's way with that MRSA. I know we all carry thye crud for lack of a better word here in our own bodies.

I pick things up easily myself but have found that wearing my shoes at all times and keeping my hands washed frequently has helped me tremendously. Before the shoe thing, I had several incidents of infections. I picked it up at a health place, in the shower stall until I learned to just not use their facilities.

Aw the snow sounds lovely. Especially if you have time to just watch it drift down. Peaceful like.

[Tootsie]

I hope that everyone had a Thanksgiving that truly reflected the holiday as it was originally conceived. When dealing with Alzheimer's Disease or any other chronic or puzzling condition, it is sometimes difficult to find things to be thankful for. However, this particular holiday, begs us to look carefully to find some thing to be thankful for, even if it seems insignificant or unimportant. That is what makes and keeps us human. Blessings.