What's Happening in our Caregiving World?

[tic chick]

hey everyone !

i went to see my mom on thursday. she was in bed, but not sleeping. this ativan seems to be working well to keep her moods level and she doesn't zonk out 5 minutes after she takes a pill. i was talking with her and she kept asking me if i knew her brother was "upstairs". i know where this memory is coming from, so i can agree with her and talk to her about it.

my mom has a new roommate, a lady that is pretty young (she looked to be in her 40's and i hope she's not going to have to stay in the nh a long time). the woman keeps her tv on all day and pretty loud, i know my mom will be complaining soon.

my mom's dentures have been missing for over a month and now her glasses are missing, too. i talked to an aide 2 weeks ago about my mom's dentures and she said she had put them in my mom's denture cup and that was the last time she saw them. i told the nurse about it and she asked me if my mom's name was on her dentures! SERIOUSLY??? i don't know how you can write a person's name on their dentures. i suppose a dentist could make some kind of mark on them to identify them, but i didn't think of that cause i didn't think her denture's would get lost. and now her glasses, too. i'm worried how my mom is going to eat and i don't know what to do about this situation.

when i was saying goodbye to my mom, i said, "be a good girl". she started laughing and then i did, too. it was a nice moment.

i took my mother's 2 winter coats home 2 weeks ago. she asked me where i was taking them and i told her i was going to clean them. i got home and wondered why i had taken them? well, cause i know my mom is never getting out of the nursing home until she goes to the funeral home. that made me cry. so, i'm going to bring one of her coats back because i can't be that negative. it is the truth but i don't want to deal with it right now and the stupid coat was just hanging there, not causing any trouble. i feel like such an idiot for taking those coats because it just caused me grief and now i have to look at them hanging in my basement...empty coats.

thank you for sharing and caring and walking with me ,
jeannie

[mrsQ]

jeannie I'm glad you got to visit with your Mom and the two of you were able to share a laugh. It is amazing how little things can be the center of our days with this.
The big deal of my day might be a blink and a half nod in answer to a question
It is hard when you have to get rid of some of their things. As my MIL got worse getting her into some clothes became impossible. When I had to take stuff from the home I went right the salvation drop box. Having to go through things once is bad enough.

It is looking like my sitter that was working out so well may be going to a better job. I'm going to hate to lose her. It has been a super long weekend here and I 'm falling asleep typing so guess I better go get a nap when I can . Have a good night .karen

[mrsjerome]

Jeanne : A possible explanation could be that your Mom might have taken them out herself. She could have done this while eating especially if the dentures were bothering her.

I know of a man that this happened to while he was in the hospital. He had taken his out wrapped them in a napkin and placed it on the food tray. By the time he realized that his dentures were missing, the tray was gone and contents were already compacted or incinerated with the rest of the garbage. Poor man, he had terminal cancer and had to be without dentures his remaining months.

Your mom more than likely does not realize if she could have done something herself with them. It sounds like her memory thinking has almost stopped working. So is impossible to get any kind of straight answer from her. What could have happened with her eye glasses is anybody’s guess. It could be a number of things even lost in the sheets and gone through the laundry.

I can’t think of any reason to take someone else’s dentures or eye glasses. So probably were thrown out by mistake.

It’s hard to believe we are talking about winter coats. LOL I am sure you have had the same hot sultry weather that we have had. As far as the clothes are concerned it is as mrs Q said to take them to the goodwill or salvation army store , that would be one less heartache than going through them afterwards.

Alzheimers is so hard to figure out, some effected with it can last for years, even outliving some of their own children and his or her spouse. A husband of a belated friend of mine told her that “her mother would outlive both of them”. Sure enough they both died before she did. I just wonder if that might have to do with all the stress that is involved in caring and seeing that they are cared for properly.

What is up with my husband has just been such a crazy situation. He has been having problems with his teeth since shortly after father’s day. Have been on a merry-go-round with the NH and dentist offices since. It is a long story that I will not get into now.

All take care

mrsj

[Buttons2]

dentures,well this made me think of oldest uncle (now 102 yrs) leaving his dentures wrapped in a napkin when he came for holiday meals. one year I got him a pair of tiny wind up dentures as a gag gift & he played with them all through the meal. he's a real funny guy & is so lucky to still be in fairly good health.

Jeannie,I agree the dentures & glasses are mostly likely something your mom did & probably nothing you can do about it. as for the coats? you were just trying to be organized I think.

all these NH stories make me hope I die before ending up in one myself.

it's good to share. can't possibly be in any of your shoes but it does alot of good to get the stories out I imagine.

I still joke with my housemate about losing our brain cells. however when he drives me to want to scream I tell him I don't have enough of a brain left to be his too! I know he's not stupid so I let him know I'm concerned & nailed him on the pill container being in the frig. yes I'm scared! things like that just remind me everything is FAR from OK.

Jeannie,you are so right,there's not one thing I can do about the situation with my parent's. I had an urge to call them over the weekend since it was suddenly so hot,then asked myself how the conversation would actually help any of us? and decided I was miserable enough in the heat & didn't need to add family stress to it.they've lasted into their 80's so guess they can survive some heat eh?

Karen,hope you get another helper soon!

Mrs. J-it's occurred to me I might very well have gotten you & Mrs. Q mixed up at times. if so, I do apologize!

[mrsQ]

Long weekend, maybe TMI & Sad

It has been such a long weekend yall. My mother in law has been sick for over a week now, diarrhea. We have tried several things the doctor suggested & it doesn't seem to help. She is so frail & skinny I worry what this is doing to her. I read on the alz.org site that the megas medication we give her to make her want to eat can cause this. She can't move at all so you can imagine this is miserable for her, she is miserable all the time now but it is like nobody else seems to notice. I use to could rub her back or read to her and she seemed to get some comfort from it but not now. She eats, stares into space and sleeps. When I have to clean her up she whines, sometimes she does this thing where she is crying but no sound is coming out. I would say 8 out of ten times I can't even get her to look at me when I call her name, a few months ago if I called her by her full given name she would respond sometimes smile but not now.
I feel like we made a mistake starting her on the megas, we always said no feeding tube, but after reading I'm wondering if this is much better.My husband doesn't see it that way & it is his call ofcourse but seeing her this miserable is so hard. She is starting to get strangled on her own saliva and the fear on her face is terrible. I find myself praying God will take her in her sleep so she doesn't have to struggle. If my current help does end up leaving us I want to switch over to hospice but my husband doesn't. I would be grateful for any prayers you guys could send our way.

[Jo6]

Ladies, please know you all are in my prayers. I wish I could help all of you.

Jeannie, it does nobody any good to wear yourself thin. IMHP you are doing the right things by not going as much. You are still on top of her care, her meds, her care all around.

Pati, the med. in the fridge is not a good sign. getting up in a chair and reach on top of china cabinet to get her meds, all scatered every where, nothing in order wasn't a good sign either.No siblings wanted to help, Thats when we decided we had to move Mary.

Karen, honey does your MIL have a Social Worker? She should have one, get her to come over and see how things are going and I bet she will advise you to have Hospice come help. Mr. Q has his problems and it looks like you have to make all the discions. Get that help before you end up in hospital.

Mrs.J., I think of you often and wondering if you have your situation straight yet. You can go on and on. Just look at me and you'll see what it will do to you!

I love all of you and you all feel like family to me. Please take care of your selves and you won't regret it later. (((((( HUGS)))))) for all of you.

That means Ms. Kitty K. too((((hugs)))) Julia

[Buttons2]

Mrs. Jerome,it's time for your DH to face some facts I'm thinking. he might not understand what hospice is for,or feels it's like giving up? well YOUR health is at issue too! and this is taking a huge toll just watching your MIL's misery. time to put your foot down. call hospice & ask that someone come over to do an assessment & talk with your DH. ask about the meds. please don't put this off. we're here for you,and yes of course will say a prayer. ((((hugs)))) Pati

[mrsQ]

Yep we have a social worker that comes like 2x a month....most useless person I have come across in many years. Mr.Q tried to get them to help set up transportation of MIL to the doctor, because she can not sit up. This program she is on is susspose to provide transportion but the social worker had no idea how to set it up so she just did nothing and left it to him. The last visist I asked if they could help me find a list of people we could pay out of pocket to sit with MIL in case something came up, they had no clue and did not even offer to look into it. They come lay eyes on her so they can bill medicaid & write up their case notes. Sorry is the only word for them.

I have no doubt she would be accepted in the hospice program the thing is I will not get the respite hours I get on the wavier program. I don't think the CNA will come as often but my concern is if she starts to go down hill there is nobody to call other than 911 and we do not want to put her through anything like that. I know we need the respite but the fear of seeing her struggle is what scares me to death. She is eating ok, but something is diffent with her it is like she is more gone than before if that is possible.

The alz groups just don't seem to have much support or info for folks whose loved ones actually make it this far into stage 7. i guess most people have other health issues that end their life before the AD does. I just hate this. I talked to one lady whose husband is in simlar shape except he got diagnosed at 35!

[Buttons2]

OK,I wish I could keep straight who's Mrs Q & who's Mrs Jerome!

well I read an article this morning about what hospice does. now I'm thinking every state is different as well as each case? are you saying with hospice you'd be worse off?

if your social worker is worthless I'd suggest you call & talk to her supervisor. maybe she's new & learning on the job? maybe she has NO business doing this type of work? you need to complain! otherwise she'll not change & must be filling out her forms to get paid & not being asked questions or lying when she answers. this isn't right!

and of course you're caught in the middle. doing everything possible & having your heart broken just seeing her decline.

you could be onto something about stage 7. hopefully not. she deserves the proper care regardless of what stage of dementia. and who are these people that come up with stages anyways?I'm guessing it all comes down to the battle for bucks? have to check a little box so someone will cover the cost? that would be shameful to say the least!

((((hugs)))) Pati & pray better days are ahead the sooner the better.

PS,I might have been reading Dear Abby this morning when I found some information. maybe you could try to find it? did you know the real Abby has been in a Alz. facility for years? her daughter Pauline runs the column & has alot of info about caregiver help-might consider writing to her.

[Jo6]

Pati, thats a good idea about contacting Dear Abbys daughter, Pauline. If anybody knows about Alz., she should.

Karen it seems ever step you take forward you lose 2. My heart really hurts for you. When you describe your MIL's sounds and the faces she makes it sounds a lot like Mary, my Mil. She had had a stroke, was paralyzed on right side. For a time we could feed her, but all foods were pureed. She begun to have trouble swallowing that and would get strangled.

They didn't tell us this, but Ken thought she had had another stroke that affected her swallowing. then it got worse and it was almost impossible to get a little water down her.

I am no Dr., nurse or expert on anything, but it sounds like your MIL is maybe getting ready to pass on. Forgive me Karen and I don't mean to upset you, but she isn't eating enouth to keep her going for long.

For those very reasons you need help with her. I simply do not understand your state being so useless. There has to be someone around to listen to your pleas for help.

Please take care and know that we all here are praying for you as well as MIL & Hubby. I'm thinking maybe you are doing more than you are able with his issues. Try to just take what he says about MIL's care with a grain of salt and do what YOU think is the right thing to do.

WE all love you and are praying for you, please know that!! my love, Julia

[mrsQ]

Thanks.
I feel like she is getting near the end but this little woman has been right there at that point so many times I have lost count. She has been on 100% pureed food for almost two years. She is having such a time with her stomach the poor thing & does not tolerate pain meds well. I just feel bad for her. I have been going to the alz support website but it so hard to find people who have folks in stage 7, I know we can't be that rare.

I hope you all are doing well. I know I have not been a good member here the last few months and I'm sorry for that.

[tic chick]

hey everyone !

karen, i don't think the stages indicate how close you are to death, they are just a list of problems that can occur at different points in this disease. the older a person gets the more they can have secondary problems in addition to the dementia. very few people die from alzheimer's dementia, they usually die of other causes. of course the dementia is a problem and sometimes masks the others. if your mil's heart is good and she doesn't get an untreatable bacterial infection, she can probably live like this for a long time. it sounds like that feeling you have that your mil is "more gone" is probably the dementia or the shutting down of her body. this is all just my own opinion from what i have read. karen, don't worry about posting infrequently. we all have lives. you take care of yourself when you can, it's a wonder you're doing this for your mil .

i saw my mom on thursday. i am so bummed out when i go see her. she was sitting in the sun/dining room. i sat down next to her and so did my daughter. she looked at us without any sign of recognition. sometimes she'll say, OH!...like she kind of figured out we were people she knew, but then it goes away as quickly as it came. she asked me how the baby was. she talked about her mother not getting her dressed to go somewhere. then nothing. i sit. she sits. on the way out i say hello to the people i know and talk to them a bit. that's it.

this is so depressing, so very depressing. i wish i could make her laugh again like i did a few weeks ago when i told her to be a "good girl". i said it to her thursday and she didn't laugh. she doesn't respond to pictures or music. she looks strange without her dentures. medicaid wants to discontinue her physical therapy because she has reached the "maximum potential" that she can from therapy. i have to sign a paper, i'm not contesting their diagnosis, i don't think she's getting any better either.

so i wonder what's going on in her brain, what she does, is she having good dreams when she sleeps at least? i will never know the answers to those questions. it just sucks. i don't know why i care, she wasn't there for me when i needed care...oh, i know the answers to those questions, but it doesn't help. my therapist says i am grieving. i am so freaking sick of grieving, of thinking about her and it's not going to be any better when she dies! i have to move on and i don't know how, yet. right now though...

i can't do a thing about it. i can't do a thing about it.

thank you for sharing and caring and walking with me,
jeannie

[Jo6]

I feel like an old Mother Hen, hugging her brood close. My heart breaks for each and every one of you. Jeannie dear, I know you can grieve just so much, then your own body will start shutting down. These are my feelings.

I grieved for so many siblingsso close together, neice & nephew, then my dear sister. Mary was still hoovering so near death. I simply could not carry anymore, but at the time I didn't realize what I was doing to my own body & soul.

That's when I ended up in the hospital. Five days out of 10 I have no idea what was happening to me. Ken has talked to me a little lately because he saw how upset it made me to have lost chunks of my life gone and I could not recall anything at all. Mostly he just says you were very low and we were worried. the grands were a little more blunt, granny, we thought you were going to die.

Well, I didn't die and for that I am thankful. I still had Mary to see too. Ken was not letting me go as much. I don't know if I have told you girls this before or not, but if so forgive me please. I do repeat myself sometimes. lol

36 years ago Mary found a very small knot in one of her breast. They were going to do a byopsy. Well, once they started they discovered it was in both breast. Three different types of cancer cells. They removed both breast. They did not give her Chemo or anything else back then. She recovered from all of that and it was so damn hard to have Alzheimer's Disease creep upon her and rob her of so many years. She had a couple of strokes sometime those last few years.

So Jeannie is right, most Alzheimer's patient's die from other things, not the dastardly Alzheimer's.

Karen, I worry for YOUR health. You aren't well, not able to do all that you do. I can appreciate all you do for your little family, you are very brave. Just Please take care of Karen.

All the rest of you, my prayers are always with you. Take care of yourselves!! all my love, Julia s

[Buttons2]

the struggle & heartache just goes on. I feel badly for all who are suffering. ((((gentle hugs)))) Pati

[mrsjerome]

My husband has been having trouble with his teeth since the week of Father’s Day. He needs a referral to see an oral surgeon in order for him to be seen by an oral surgeon. It is very hard to find a dentist that will take the state Medicaid insurance or the NH insurance he has. One was found and he was seen the first week of July. They were unable to get x-rays but he was given a referral. An appt. with an oral surgeon was set up for the end of July. They would not do anything cause no x-rays were taken at the other office and at this office were not able to get what was required either. Even though the NH was told to take him off the Coumadin and have him on an anti-biotic. They will not do extractions without x-rays. So another appt. was set up at a different oral surgeon’s office that was last week.
What a nighmare this turned out to be. First the NH did not assign an aide to take him there. The other two visits he was accompanied with an aide. Next the transport van driver just dropped him off in the lobby of a 5 story medical bldg. by himself. My son and I were to meet him but we entered the bldg on the opposite side which also has a lobby. We went up to the dental office figuring that is were he would be taken.
To make this short my husband was in that lobby for 2 hrs. He doesn’t walk any more and they even use a lift to get him in and out of bed. The receptionist in the lobby approached my husband and was able to get enough information from her that he was there to see a dentist.
In the meantime efforts to reach the transport co. or driver calls were not answered. Where driver went is anybody’s guess. My son & I left figuring that something happened with transport as NH was not able to get a hold of them. And he probably never made it to the dentist.Then the receptionist in the lobby got a hold of my number and called me. We went back there and was told that he was just picked up. She explained what had transpired and told us that she felt so sorry for my husband having to be there by himself.
Well each entity blames the other, First no aide assigned, then driver dropping him off, then dental office for not coming down for him .
In my opinion very close to borderline negligence with the lack of communication all around. My husband could easily have fallen out of that wheel chair and been hurt.
A new appt is made for the end of the month but the NH assured me that an aide is scheduled to be with him this time. After this fiasco feel like I am one step away myself from being admitted.