What's Happening in our Caregiving World?

[mrsjerome]

The problems with my husband’s stomach pain are from ulcers. The blood test he took last week tested positive for the H Pylori. So they have him on a combination Biaxin, Amoxicillin, and, prevacid for the next 14 days.

I went to see him on Tues. and he complained to me that he had a toothache. They recommended a dentist from the area (this would be a cash deal as very hard if not impossible to find dentists that take straight Medicaid). Well anyway when I got home looked this guy up online and didn’t see anything about extractions in his web site. So I called over there and found out he does not do them but just recommends an oral surgeon. So I thought just wait a minute why take him there if he will just recommend him somewhere else. So I called the oral surgeon’s office. Whoa good thing I did what they charge is highway robbery. So I called my dentist who charges a lot less and I was able to get him in for the next day Wed. but later in the afternoon.

So luckily my youngest son was off that day and I was able to get his help with the drive and getting him in and out of the car. The drive was 45-50 minutes mostly in the dark as this time of year gets darks early. Well the dentist took an xray of the tooth and told me that another one was cracked as well. So I had him extract the both of them.

My husband did ok and when we got back to the NH I gave them the post extraction instructions and also the script for the pain reliever if needed. Husband just went to his room laid down and was watching the TV on when we left.

I plan on going there this afternoon to check and see how he is doing

I am just thinking that the bacteria affecting his stomach probably has some correlation with these bad teeth that were extracted. Will have to give it a wait and see how it all goes.

Oh yes, I think everyone suffering from dementia of any kind are so unique in some of the things they do and say. It is like each and everyone of them are on their own planet somewhere.

Take Care

mrs j

[Jo6]

Mrs. J., you are so right. The sad part is you never know which planet they are on at any given time. I'm glad your son was able to help you out. I was trying to picture this in my mind and for the life of me I could not imagine Ken and I trying to get Mary any place even before her stroke. We can smile about it now, but at the time nothing seemed funny.

I'm hoping Mr.J will get to feeling better very soon. The bad teeth may have had something to do with the stomach infection. If they feel better, you will feel more at ease leaving him. Here is wishing the best for the both of you! ((((((Mrs.J & Mr.J.))))))

Ken finally had to admit, to himself and to the rest of us that he was not Super Man after all. His Moms desire to get what she wanted at the moment was greater than his ability to handle her. He would have to take her out of the examing room at the Drs. office, go sit in the lobby about 15 min. and have them call her back again. that worked a time or two, but shortly after that he would tell the NH to call an ambulance and he would meet them at the hospital.

That's when it became very hard for Ken to make decissions as to whether to let them "treat" her or not. It was a constant battle within himself as well dealing with his siblings about what to do. Ken had the medical POA, but he always asked the sibs. how they felt about it. He tried hard to do what was best for his Mom, but I guess he wanted some love and support from the sibs. He finally stopped asking them. They had no love or support for him. Always second guessing him.
Mrs. J., you have really done a super job of juggling things yourself. You aren't well either. Two surgery's in such a shot time, I marvel at how well you treat and get thru everything. I'm afraid you are over doing it for your own health sake. Please take good care of yourself. That has to be your first objective for the time being.

I send my love and prayers, Jo

[Jo6]

((((((Jeannie,)))))) it sounds to me like you are really lacking in sleep. I'm glad you took a little nap even though you were visiting Mom. I wonder too about your Mom reading. I hope she can. Mary had gotten to where she couldn't read the news paper before we placed her.

I remember one night she got a bank statement, not right month, not even right year and there was nothing to ask somebody about. She stuck it in Kens face and wanted to know where all her money was!! and why didn't SHE have some. Then she brought her purse to him and turned it upside down to show him she didn't have any money.

I will say, I felt sorry for Ken. He tried to help her understand where her money was, and all she had to do was tell him and he would GET her some money. Well nothing satisfied her. She was on one of those other planets Mrs.J. taked about. lol IT was sad, but too, it was funny. It had been years sinse she had even mentioned money. She finally huffed off to her room. I heard her all night long, moving stuff around . I was afraid to see what she had done. When she finally went to bathroom the next room I took a peek and everything looked just like I left it. Never did figure out what she was doing all night.

Jeannie, to me it sounds like your Mom is comfortable with you. As long as you are present she seems to relax. Now I'm not there and it may not be that way at all. I just hope she can enjoy a book, but even if she can't read it anymore at least it seems to give her comfort. We can thank God for small favors, eh?

Now on your home front, GET MORE REST!! I love you dear friend and I don't want to see you go down the tubes.

all my love, Julia

[Buttons2]

about all I can do is offer cyber (((hugs))).

did anyone else catch the news about a blood test for Alz??? maybe that's some kind of progress.let's hope so!

I swear there are days I question my own sanity/brain function. am I taking on my housemate's issues?and more & more I'm thinking how his daughter's death this summer has affected him. I try to be patient & understanding but truth is I'm just plain sick of it all. be glad when this month is over!

you ladies are much admired. and as Jo always tries to push....take care of yourself first. she's the wise one that's been through it all & then some.

[Jo6]

Pati dear, you are way too kind to me. I do think it is most important for the caregiver to take care of self first! It isn't being selfish, either.

I have known too many caregiver's died long before the patient. It does make sense too.

Pati, I know I begun to feel like something was wrong with me instead of Mary, but one day she was "reading" the paper. I wanted to read it too, but she didn't want to share. lol Well first I noticed she didn't turn the pages. I looked over her shoulder and she had the paper up side down!! That made me sad. I didn't try to hurry her up anymore. Unless it was time to go to DayCare. I would get her dressed, give her breakfast and go to brush my hair. come back and no Mary to be found. Went to room and she had undressed, put her gown back on and was crawling back in bed. Everyday, something like that. lol

Pati, don't question your own sanity. Just from things you post here it is clear HM has some kind of Dementia. A death in the family will cause the disease to speed up sometimes. I think maybe HM is suffering from daughters death, but it is comming out in different ways. Being agravating to you all the time----misplace punishment for not being a better father? Just a thought Pati. I'm learning with the rest of you.

Now that I can stand back and look on some things are crystal clear, but a few years ago I just couldn't get it. I will always be grateful for all you ladies and the men that pop in now and again for all the encouragment and understanding that you all sent my way.

I love you all, Jo s

[tic chick]

hey all !

i didn't visit my mom this past thursday. my rubber seal on the front loading washer broke and the repairman was coming out to put a new one on. then i went to price kitchen flooring and i had a counseling appointment and then the father of our children ( i STILL don't know what the heck to call him if we're separated but not divorced), had a doctor's appointment. friday was shopping day and i went to the salon and got my haircut.

it did bug me not to be able to see her, but i can't do so much at this time of the year. and it was wicked cold on thursday also.

i'll definitely see her next week. i'm making borscht (russian beet soup) for christmas and i'll visit her the day after and bring her some. she always did like it and that's where i learned to make it, from watching her.

i agree with julia, pati. you are too hard on yourself. dealing with your own feelings and watching someone who is having memory probs takes a toll on you. stressful events do make dementia worse.

julia, if only we all had a crystal ball, huh? we could see where the future was going to take us and our loved ones. but we watch them lose function so slowly and then one day they are not functioning at all and we know we can't take care of them ourselves. the time that takes for each of our loved ones varies. i'm glad you still come here. your experience is valuable and i think you still need to grieve over your mil...and so many others .

take care of yourselves first, amen on that one.

thank you all for being here and caring and sharing,
jeannie

[mrsjerome]

Well folks, hate to say it but it is the truth. My husband is a real nut case. He is back to his old tricks again. I don’t know how much longer the NH will put up with him. I am at the point that I just can’t take it anymore.

I was called a couple of times last week about his escalating nasty behaviors. I have made so many excuses for him with lately his stomach and dental problems. You name it and I was there trying to stick up for him. Well no more I have had it!!! Especially after talking to him on Sat. with him at first denying anything and then later admitting it. Talking to him at times is like being on a carousel.

He is back to the mocking and making faces at the other residents. He grits his teeth and gets real red on his face. He calls the other residents retards and even has gone in another resident’s room to yell at the poor man for making undesirable noises that some residents do make. He is hollering at the staff calling them lazy. He continually is pulling the call buzzard, even to the point of the nurse leaving the room and just getting to the door with his pulling the chord again.

They had to call me again today to get permission to up the dosage of one of his meds. I don’t believe this med has been beneficial but will no longer stir the apple cart and okayed it. It would be very bad if he would get physical and hope it doesn’t escalate to that point but one just never knows.

I am afraid that they might just send him out to some psych unit for an evaluation and then refuse to take him back.
So it looks like will be in for a rough holiday. When will this ever end?

Take Care

mrs j

[Jo6]

(((( mrs. j )))) how my heart breaks for you! I will write you soon. I do beg of you to get YOUR rest, let the NH take care of him while he is in such a state. Two surgerys in such a shot time is not good and you need to allow yourself to heal. Being constantly called to the NH is not good for you. If truth be known, it probably isn't good for him!

I don't know how aware he is of things around him, but could he be "acting out" just to get you over there? It's amazing how they can be so cunning some times.

Please take care of yourself!! much love and prayers comming your way, Julia s

[tic chick]

hey everyone!

mrs j, i don't see any way the nh can kick your hubby out. he has dementia! they should be used to these kinds of patients and know how to handle them. i don't think your hubby is the nut case over there...in my humble opinion. tell them if they can't handle him to transfer him to another nursing home that can. call their bluff. they should NOT be calling you about his behavior. they should handle it themselves. tell them you are ill yourself and can't handle the stress. i bet it's pretty close to the truth with them calling you. i think any meds besides ones that are meant to calm a person down really don't work in people with dementia. if they are giving him atypical antipsychotics or the older antipsychotics, be aware that those hasten death in patients with dementia. you do need to take care of yourself, as julia said .

well, my momn was in bed when i visited last thursday. i woke her up gently and she looked at me and said, "didn't you go to school today?". i sat and listened to her. she was distressed thinking someone was hitting my sister. then when we left i said good-bye to her and she said nothing, but she said, "goodbye robert" to my husband. it pi**es me off to no end that she remembers his name and not mine, but then she remembers my sister's husband's name and not my sister's, too. so, i guess that's just a function of her dementia.

i am getting used to this...maybe that's a good thing, maybe it's not. i don't know anymore. christmas was quiet here. i went to a friend's house on christmas eve for dinner and had a nice time. today i walked about 2 and a half miles and played fetch with the dogs, it was sunny, but about 40 degrees and breezy. i just had to get out of the house and get some exercise. it helps a lot.

i hope i can get to bed early today...i seem to be burning the 2AM oil a lot lately...lol. i'm bad.

thank you all for sharing and caring,
jeannie

[Jo6]

Well good for you, Jeannie! It is good to get out and not meaning to be harse, but it is good for you to "get used to it"! We both know it isn't going to change for the better. Some good days, some bad days. It's sad, but true.

Ken has shown signs of going backwards as far as dealing with his Mom's death. I am not allowed to say anything, in any form or fashion about Mary. So, I've learned my lesson, keep my mouth shut and deal with it the best I can in my own mind! I sound like a raving lunatic myself this morning.

Mrs.J., I'm so sorry about Mr.J. I'm wondering, as I said in prior post if Mr. J. is doing these things to get YOUR attention and in his confushion thinks if he is bad enough you will take him home. At one point Mary did things like that. I stopped going with Ken for awhile after my hospital stay. Ken didn't tell me, but his uncle that was in the same NH(he had Parkenson's) told me how Mary would show out every time Ken would start to leave. She would get hold of him, wrap her arms around his neck and scream and cry and carry on like crazy, wanting him to take her home.

Had I known this I might have understood Ken's behavior towards me. As it was I just thought he was being mean and hateful all the time. I hope for your sake the Drs. will try Mr. J. on different meds and see if he can't get him leveled out. At one point the Neuro Dr. had told Ken if at all possible not let his Mom have surgery because the ansthesia did things to an Alzheimer's patient and they would not be the same. Well as you all know, she did have to have surgery, 3 different times and that was about the time she started kicking and hitting people. One nurse told me she had beat up every one that worked there. they never mentioned making her leave and go to another NH.

I just hope they can do something for Mr.J. for his own sake and of course, your state of mind. Please know we are all here and if you need to rant and rave, have at it honey. The people in this Forum helped me keep some sort of peace of mind. Otherwise I would have gone completely mad!!

I kinda sound like that today, eh? Pati, that brings me to you, dear one. I hope your Christmas will be peaceful and happy. You may have to make some hard decision's this comming year. Never doubt your own sanity. You are over loaded and a good dose of peace of mind would do winders for you. Send HM to a NH.!! That would be a start. Forgive me if I'm out of line. I love you dearly and want only happiness for you.

the same for you, Jeannie, Mrs.J., Jan, Mrs.Q, Ging and anybody else that I've missed. Peace and happiness, that's what I wish for you all. I guess I cound add my name there to. I have a load of chit riding on my back and I need it OFF!!

all my love, Julia s

[mrsjerome]

Jeanne

Oh but the NH’s homes have their ways to be able to get rid of unruly patients suffering from dementia.

If the patients can’t pay for their care
If the patients become violent
If the patient’s symptoms deteriorate beyond the facility’s ability to care for them.

There is a term called ”dumping”. The NH sends the patient to the hospital for a 48 or 72 hr. evaluation. When the hospital tries to return the patient back to the NH, the NH refuses re-admission using their own resident Dr.’s recommendation that it is not safe for the other residents to have this person back. In the meantime the patient and family are sort of like stuck in Limbo. Nobody wants the patient.

The family will be told it is a safety issue. Some of these patients die during this interval, others may just be put in psych units at mental hospitals. Always the drug regiments are increased and as you have said are not serving the patient but increasing the likelihood of death as the elderly cannot and really should not be given these meds.

A person can sue but by the time it would be processed through the court system and anything resolved it is too late.

With the great need for long term care in recent years and more of the need for it in years to come, we are seeing more and more of it. There are not enough qualified NH facilities, so they cherry-pick the easier care patients. Of course this is not right but it is done very often now. That’s just the way it is.

Here is a story from almost two years ago involving a family that was dealing with this problem.

Only registered and activated users can see links., Click Here To Register...

This man died shortly after this story was written.

There will be an evaluation meeting later this week about my husband. I hope to find out more about his situation at that time.

Take Care

mrs j.

[Buttons2]

Jo, I have no authority to put my housemate in an facility or insist he have some neuro testing done. I've recently had a "brain" moment & am now wondering if he has Parkinson's! his hands shake rather badly @ times & I started to connect the dots of his behavior. his uncle had Parkinson's & we both still recall his strange behavior.

Mrs. J,I'm appalled at the NH calling you all the time. can you discuss the situation with the director or someone?

and what did I just read about giving antipsychotic's to the elderly!!!!!! this is horrid news to me. I've seen firsthand how those drugs can affect someone & it's not good.

hang in there all of you,put yourself first or you won't survive the pressure/stress. oh yeah,listen to me would ya? acting like I'm the wise one or something. all I can say say for sure @ this point is that I'm learning.

((((hugs to all)))) Pati

[Jo6]

((((Pati)))) Dear one, I know your say so is limmited where HM is concerned. I'm just wishing you weren't so "ham strung" about getting him to Dr. and etc.

If you could get him to go to Dr. and he would allow you to go with him to the Dr. probably could tell one from the other, but in certain stages they do sort of "overlap" as far as their behaviour. Ken's uncle was in the same NH Mary was in. His wife was also there. She had Alzheimer's. He had Parkenson's disease. They had him on the floor that Mary went in at first. When she got really bad they moved her down a floor, the ones that were there never left there.

Anyway, there were times his behavor was a lot like someone with Alz. then he would seem fine emotionaly, but his hands & much of his body would shake really bad. I wouldn't know one from the other, but I think a visit to Dr. would probably tell. I don't think Fred got hateful and mean, but I wasn't with him all the time.

So, maybe you are on to something. Pati, you have as much a right to say what you please as any of us do. I tend to be a little bossy too. I suppose you've noticed too. lol lol We never know who might be helped with some of our words. You know plenty and I am still learning too. I doubt my own sanity more every day.

Mrs.J. I hope you got something good worked out. I know it has been a very big stress on you. you've got to take care of yourself. You are the one I worry about most right now.

Please everybody, take care of your selves. my love to all, Julia

[Buttons2]

well the Parkinson's forum here has never been very active. perhaps cause it's too difficult to type? this morning I asked my HM if he finds himself writing very small @ times,he admitted he does & asked why I wanted to know. I reminded him of the doc's that thought I had Parkinson's when my entire body was jerking & how much research I had done & indeed I did have some symptom's but most went away.

I said I wasn't trying to nag him to death but I feel getting a diagnosis sooner rather than later might be helpful & I'm certainly not a doc but just concerned for him.

now that his daughter's memorial is finally over hopefully he will begin to wonder about his own health & make a game plan. grief does funny things to people afterall.

[Jo6]

yes, it does Pati. Although HM's symtems were already noticable before, they seemed to get worse when his daughter died.You are there with him all the time I would think your thoughts about what was wrong would count for something.

I know it has to be hard for you, as I said once before I was in a somewhat situation with Mary. they wanted me to care for her, they wanted me to take her to Dr., but boy howdy, when I came back and told them he said Alzheimers they Hated me!! It went that way back and forth the whole time. I'm beginning to realize why I was having such a hard time with her. Ken just didn't want to say anything to "upset" them!! I think that was what my Dr. called him about one night about 10:oop.m. He'll never tell me

I think you mentioning your health problems long ago may make it easier to get him to the Dr. See, you aren't stupid, you are mighty smart to think of this. No matter what is wrong maybe you can get to the bottom of it and decide what your game plan is. With anything I ever say, just take with a grain of salt. I didn't do so good at handling things myself.

Mrs.j, How are things going with Mr. j ? I know it has been hard for you and I worry for Your health. Let us know, please? You both are in my prayers. Just make sure you get your rest.

My love to all of you, Jo