What's Happening in our Caregiving World?

[Buttons2]

Jeannie,I don't want you to think I've deserted you on this forum! I'm trying to get used to the new site (should say trying to accept it's here & nothing I can do about it).

I used to write about my mom & my housemate seeming to have some type of dementia. I don't feel it's appropriate here for those of you dealing with Alz. my heart aches for what these visits to the NH do. I'm glad you've decided you don't need to visit every week. and the guilt Karen feels when she just can't make it to her MIL's room or has to put her DH before his mother is tragic.

I can only read & feel blessed I'm not in any of your shoes. My housemate is getting more & more forgetful nowadays & as for my mom? I don't call her as often. if I thought for one minute she enjoyed me calling it would be different.

when I read that we are now looking @ a future of 10 million (or is 100 million?) having Alz. in the future it makes me furious. why can't they find the cause? before we'd heard the word Alzeimer(sp) it was just referred to as dementia. did they come up with a special word to sell/promote new drugs? as far as I know it cannot even be confirmed until the person is dead & an autopsy performed?

I guess I see a dim future for far too many of us. in other words it's depressing.

maybe I feel I have nothing to offer,just some cyber ((((hugs)))) and know I care & wish you all could be spared this heartache. Pati

[tic chick]

pati ,

i kind of thought you couldn't find this forum because it is way down the page and you have to really look for it. no, i didn't think you deserted me, you are too good of a friend and person to do that, but it was getting kind of lonely with just me and karen posting.

pati, if you want to, just start a thread called "my mom" like your other one was called and write a short first post. i will transfer all the posts we made on it from the old forum to this one. i think it's very appropriate for you to write about your fears about your mom and about your hm. it does sound like your mom does have dementia, but i don't know since you also said she isn't taking her thyroid meds anymore and one of the side effects of doing that are a poor memory. i know you live far away from your parents and i know what it's like to not want to talk to someone, but i worry that one day you are going to get a call out of the blue and you're going to have to make some tough decisions with your sibs as to what to do with either or both your mom and dad. that's usually the way things happen if parents are living alone and family doesn't see them very often, so they don't notice the little things they do daily that don't quite add up to having full mental faculties.

i've always loved my mom cause she is my mother, but i've never liked her as a person. i find it strange that i am so emotional about all of this...of course i pity my mom for having this happen to her cause it is so terrrible. maybe all the anger is gone and now all i can feel is the love i have for her and that's probably good.

pati, i am sure they are working feverishly for treatments for alzheimer's disease. it would put a great strain on states and on other's for them to have to shoulder the burden of caring for us baby boomer's, the biggest generation, who are now at the age where alzheimer's is beginning to strike us. i read the other day that glen campbell, the singer, has been diagnosed with early alzheimer's. yes, the only way they can tell for sure if a person had alzheimer's dementia is if they did an autopsy of the person's brain when they died. but, they can do memory tests and brain scans that pick up early signs of dementia. also your medical history matters. like puddykat has had strokes, so she has vascular dementia. there are about 7 different types of dementia, all from different causes all with close to the same effects. so all dementia's aren't from alzheimer's disease but alz. disease is a form of dementia.

pati, you just coming by and giving cyber hugs is enough, but you have more to add than you think.

thank you for sharing and caring ,
jeannie

[Buttons2]

wondered if we all had to scroll down to find this forum

Jeannie,it did take me awhile to figure out "the scroll".

my brother has been living with my parent's for several years now. I've let my dad know that I keep in touch with the neighbor lady. his mind is just fine for his age. I never question what he thinks of mom's mind however. that might shut a door afterall,and I believe he would say something if he was concerned. as you said when you live with someone 24/7 you do notice the little changes.

thanks for offering to bring up my mom's thread but right now I don't care to reread it. same with my housemate. none of us can control the future. I've learned alot from all of you here.

my neighbor's dad has Alz. (he's in Michigan & on Aricept). I always ask her how he's doing. fortunately he has family there for help & to support her mom.

as for my housemate? well I'm figuring out how to circumvent some of his memory lapses. since he does most of the grocery shopping I've begun to write out the entire word rather than use shortcuts,he always brings home something that catches his eye......well his money so not worth a fuss if it will never get eaten.

I also love my mom but have never liked her. she's not a likable person which is sad. when I'm talking to her & she seems to be in "today" I try to let her know I appreciate what she taught me in the past such as how to clean thoroughly. I only do this if it's sincere. I doubt if she gets much thanks from anyone else.

one day I asked how I came to be born in a little town in WA. not sure if her story was correct but it was interesting & gave me some insight into how alone & trapped she must have felt. the older I get the more I understand her behavior over the years.

here's one of those cyber ((((hugs))))Pati

[tic chick]

hey pati !

i knew you had the neighbor lady watching your parents, but i forgot about your brother. i'm glad you've learned so much from us and you're right...there is nothing you can do when people you care about get dementia. i have to keep reminding myself that daily.

it's strange that you mentioned that you asked your mother the story of how you were born in a small town in WA. when my mom was talking last week about me hiding from my mother's mother (my grandma), she was talking about her being pregnant with me and unmarried. back in 1954 that was a social stigma and i knew my grandma would never have let my mom have me unless my mom was married and that's why my mom and dad got married. i got upset because i figured out in a few minutes of my mom talking to me last week how scared she felt being pregnant and that i was "hidden" inside her because she didn't want my grandma to find out she was pregnant.

so, my mom had an aide call me today and she sounded like she did about a year ago. scared and yelling and wanting to go home. but this time when i answered the phone, she said, "who is this?", and i said it was "jean" and my mom said "who?" and i said "your daughter." she said she was crying because she just realized her mother and father had died and noone told her. she asked if i went to the funeral. so, i told her that her father died over 40 yrs. ago in 1969, when i was in high school and she said, "oh, yeah it was a long time ago." but she didn't remember how my grandma died in 1981. so i told her it was after i had my middle child and that she was working at the hospital where her mother died and that she was with her shortly before she died. she didn't remember that at all.

than she started yelling about going home and i didn't want to deal with that, so i told her to give the phone to a nurse. i talked to an aide and told her my mom was really agitated for it being only 430pm and asked her if they could give her some xanax and calm her down if she hadn't had any in a while. she has the prescription written so the nurses can give it to her anytime she seems anxious.

so, as i said in the previous post, my mom seems to be forgetting more and more lately.

as i said, i hope this cancer or her heart problems cause her death before her brain is a shell containing nothing but pain or gibberish in it.

i cannot do anything about this. i cannot do anything about this.

thank you for sharing and caring,
jeannie

[Jo6]

hello everybody

Well I finally found you all, but may never get out! I feel so sad reading about all the problems you fine friends are trying to get thru. I know we discussed this before, but it is still hard to become your mother and she becomes your daughter. I still remember vividly the day the sky fell in on me when I realized this had happened with my own mom. It also happened with Mary too. Heartbreaking, that's all I know to call it.

Jeannie, I haven't forgotten you. I see you are going thru some very hard times. Never knowing what you will find when you go. Feeling so down when you leave, many times I just had to pull over to the side of the road and cry my eyes out before I could go on.

Pati, I don't feel like I have anything to offer these days, but I think about it and I realize you and I both have things to offer. Of course our love, caring how each and every one is doing, who knows, we may have a light bulb come on and something special may just tumble out of our mouth's. lol

I'm having a hard time trying to deal with Lady Caroline's death. She died Oct. 1, 2010. My birthday is Oct. 3rd. I entered the hospital on Oct. 4th. 2010, stayed 10 days. I am just now beginning to deal with all of that. then Mary died in May, it was a rough year. Ken is doing much better trying to deal with his Mom's death. More so his ugly siblings. I just pretend to listen and let him talk it out. If it drags on I try to change the subject.

Karen & Jan, my thoughts have been for you too. If there are new people I care about you too.

Jeannie, sometimes we just have to find a place to stick those thoughts, but I don't have a clue where to stick them!! you asked one day if it was wrong to pray your Mom would go on quiet and easy with the cancer and not live forever in that mixed up world of nothing. My opinion would be that it wouldn't be wrong. We hate to see how they lose all memory of their former life. Their former life may not have been so great though. As you can see, I'm still trying to plow thru all this.

I love you all and if I can do any thing for any of you please tell me so. My prayers and thoughts are with you all.

all my love, Jo

[tic chick]

julia !

i'm so HAPPY to see you!!!

please, don't ever feel that just because mary has died that you have nothing to offer or remember about the years she was ill. you can STILL share stories with us if we run into a similar problem with our loved ones that reminds you of a problem you had with mary and how you got thru it. you can STILL grieve here about what it was like for mary to finally die. we will come to that day with our loved ones sooner or later! and i will take cyber hugs from anyone !

you just told me something, too. you said sometimes when you left the nursing home after visiting mary you would have to pull over to the side of the road and cry. well, my husband drives me to the nursing home, so i don't have to pull over, but somedays i just start crying in the car, too. uncontrollable deep sobbing until the pain ends.

it helps. they say it's good to cry when you're unhappy because studies have shown that the tears contain chemicals that aren't good for your body, so in a way your body is getting rid of bad stuff when you cry.

so julia, i do hope you're feeling better and i'm glad you're back...because i do need your support here and i need pati's and joy's and karen's and jan's and jim's and dawn's and chris's and anyone else's that passes thru here every once in a while.

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

[tic chick]

hey everyone !

well, thursday my mom was still hung up that she didn't know her mother died and asked me if i went to the funeral. so, i told her the story again. it does not ring a bell for her and she seems so sad about it. i wouldn't have said my grandma was dead if i knew my mom didn't remember it and that she would get upset about it. my husband's mother got upset when we told her that her sister and brother had died. of course she was at the funeral's, but she didn't remember and it upset her too.

my mom doesn't call me by my name and she doesn't remember my brother's and sister's name either, so i don't feel so bad. but she remember's my husband's name and my sister's husband's name. i don't know if what i say is going to upset her each time i visit, so i'll just keep telling the truth and deal with her sadness. but, she is slowly losing her memory and her mother being dead prolly won't bother her in a month.

karen, i'm thinking about you and mr. q and hoping things aren't going as bad as you thought they might. please update us when you can.

i'm getting some interesting insights from my counseling sessions...and not very pleasant ones. childhood is a very impressionable time and if you didn't have pleasant memories because of things that happened and feelings you had, you will tend to experience those feelings again and find yourself in similar situations. i have healed my childhood wounds, but there are deep-seated feelings left that prolly will pop up and stay from time to time. and i will have to deal with them again. but, i have learned lessons from the past and they have stayed with me. so that is good!

thank you for caring and sharing ,
jeannie

[joy]

Hard to believe it is October already. Mothers' birthday month then my son's. I don't have much to talk about lately it seems, things have been real slow. I think I have already started hybernating as I don't like cool weater. burrr.

[mrsQ]

Hi guys.
Just a quick hi to say I'm thinking about all of you.
Mr.Q is in the hospital and looks like he will be for some time. I'm seeing mY MIL once a week, she has no clue who I am and doesn't seem to enjoy the visits but at least the staff see somone is checking on her. I have to go buy and pick up some things for her from the store today to take this next visit. it is sad she gave up so much for her kids and my sorry sis in law hasn't called to even see if she is alive in months. Hope you all have a good week.. sorry for the short post .

[Jo6]

Hello everybody

Karen, I'm so sorry Mr. Q is still in the hospital. I hope you all have found some answers and they are helping him. You post anytime, no matter if its long or short. We want to hear from you. I worry you aren't taking care of your back! I know the pain and it isn't pleasant. sometimes it gets impossible to walk. You just take care and let us know. ((((Karen))))

Joy, it's good to hear from you. I see you have written me 2 PM's, but I can't get them. How the heck do you get them where you can read them? It seems we both have some sadness in Oct. Lady Caroline died on Oct 1st. my BD is the 3rd, my grandson is the 4th , got a granddaughter's BD on the 16th and son's on the 10th. My EX-MIL's is Oct. the 31. She turned 90 last year. I think that is all. So the feeling are mixed. I hope you are feeling better. Send me an email at home. I think I know how to get those. lol

Jeannie, I'm so sorry your Mom is forgetting so forgetful. When they don't seem to know us it kinda hurts, but down deep I felt at times Mary knew me, but just couldn't get it out. she would call Ken something that sounded like his dad's name. The looks she gave Ken told me more about her knowing him or not. I know you are getting to some heart breaking times. I wish I could do something to make it better.

If you don't feel like dealing with it she won't remember that you didn't come on certain days. I think it's best to do your visiting the way you started off doing. We went at all different times and it would get confusing to me sometimes. The worse was when she couldn't talk, but she tried to. All garbled and she would look so distressed.

I'm sorry, I don't mean to talk this way. It's no way to cheer you up. I'm enjoying the talk about your landscaping and flowers. Heck Jeannie, I'm enjoying your talking about Nick and Nora. I enjoy Pati talking about his little dog. He likes Tomato's! We still have a few, I'll have to sent them to you Pati!

You girls mean a whole lot to me and I love you dearly. I hope today was a good day for all of you.

Take care, Julia bunches of hugs s

[Buttons2]

catching up.....again!

OK, I need to make the effort to do the scroll more often!

Karen,do you have any support around? I think you mentioned no family lives nearby? you've got too much to deal with in my opinion. just having Mr. Q in the hospital is alot of stress! how's he doing? as for MIL it's good you visit to keep the NH staff aware,I truly believe those that are in NH's need an advocate. even with Ken & Jo visiting the horror stories Jo wrote about were indicitive to NH abuse. guess it's part luck in getting into a good facility? please know you can come here & lean on us anytime you feel the need.

Jeannie,yes tears are a good release. can't keep the plug in forever. I didn't mean to imply my mom wasn't married when I was born. she actually told me how she ended up getting married in the middle of the night & shortly afterward they moved to WA where one of her sister's lived. she must have found my dad rather "dashing" at the time. he was/is an attractive man but they have never been right together. he was an alcoholic during those early years which I had no clue about until I was in my 30's!

I'm so wrapped up in my own daily issues with my housemate I'm just putting my mom & her issues on a back burner. it will all come to a head one day & then I'll have to take some action I suppose. I do not have a forgiving nature & the visit with my folks 3 yrs ago is still very painful to me.

Jo, you had no chance to deal with your grief over Lady Caroline! everything hit you suddenly after years of a very heavy emotional (and physical) burden dealing with Mary & your body just collasped-literally! grief has no time frame afterall. I'm relieved to read that Ken is doing better,you also had to fight tooth & nail to keep your sanity dealing with his obessive behavior & the in-laws. you did it though! you have survived Jo & even though your body is going downhill you are a true Southern Lady & will get through whatever life throws your way.

this morning I discovered my housemate had left a burner on the stove,at least he had removed the skillet/oil. I'm hoping his sons will recognize his mental decline when they go hunting together & force him to see a different doctor. not counting on it however. they seem to not care in my opinion. one year one of them called me before a trip to MT to see if I could discourage him from drinking at the hunting camp! now how the heck was I supposed to do that?

well I've said before that none of us can see the future. sorry to say I'm not optimistic about it.

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

[tic chick]

pati ,

geez pati, leaving a pot on the stove is dangerous. my mom did that once, but her smoke alarm went off so she was able to take care of it. she burned the post, but not anything else. she wasn't going out much at that time, so thank goodness nothing worse happened. that's why i worry about lor's fil and something like this happening.

pati, i didn't take it to mean that your mom was unmarried when she was pregnant with you. i just empathized with your story and told my mom's story of the hard time she had being pregnant with me.

i didn't see my mom this week. it's been too sunny and i'm doing lots of work in the yard, cause i think once this week and a half spell of sunshine and no rain is over, we're gonna get clobbered ! maybe i'll go see her tomorrow.

thank you for sharing and caring,
jeannie

[Buttons2]

well came to this forum first today.

my mom called me yesterday. talked for an hour about my sister & my brother. I just listened & tried to weed out fact from fantasy as best I could. I didn't get upset with the dumb reason she called. since I've concluded we were actually two different families (I was the only child for 9 yrs), I have a different attitude. it's like I'm not one of them so she feels free to tell me alot of stuff I don't care to know.

housemate had removed the skillet, good thing I saw the red light was on for the burner! I let him know what he'd done. not the first time it's happened either. I seldom go anywhere these days,his driving bothers me now. he's always been such a mellow guy,but lately he's bordering on road rage. I realize this could be yet another sign of dementia. lucky for us we still share some sense of humor about most things.he's changed alot during the past 15 yrs but then so have I. I try to let the small stuff go but it's not always easy!

good for you to stay home & work in the yard rather than visit your mom. our nice weather is gone now & when we had it I cherished every minute.

Jeannie,do you still want the Sue Grafton book U? I got boxes from the post office yesterday & forgot a book envelope! (who has the bad memory around here?). I could get another box & send you alot of books if you let me know what you want. haven't done too well this year selling my books but who knows they could all go @ my last sale. I have The Help also & would be glad to pull it from my shop if you want it.

take care everyone.

[Jo6]

Pati, you are very kind and I do appreciate all the kind things you said. Yes, you were right about Lady Caroline. I have had such a hard time lately, it just pops up at the strangest times. I'm glad you were able to deal with your Mom's call. I can understand you feeling like a seperate family. I think that is why I felt like Ben was my father. He was 10 years older than me. Yes, the time will probably come when you have to deal with some of this, but hopefully brother and sister will step up and do their part. I pray for your sake they will.

It also scares me to think of your housemate leaving the burner on, was it grease he left in it? I had an uncle that did that and my cousin was very lucky to happen by and got the pan outside. It had already caught fire. That's when she had to put him in a NH. Susan was talking to me today about how she had witnessed so much from the nurse's when they had to put her Dad in the NH. It was horrible.

When you said "road rage" it was like a pail of water flying in my face! Ken is making me a wreck just riding to the Dr. with him. He is getting much done concerning his mom's estate, but I've learned to just keep my mouth shut! He is much better in some ways, but he seems to be sliding back. I decided that I would not take any more crap from him. The children are aware so that helps me. I shouldn't grip so. I would like to enjoy what life I have left. That shouldn't be so hard, eh?

Jeannie, You are right to enjoy the sunshine and nice days while you can. Mom will still be there tomorrow or which ever day you go. I am enjoying your yard and flowers, can't wait until you get it all done. You have much to keep you busy these days. I hope things are going well.

Karen, Ging and others, I hope all is going well with you. Let us know how you all are.

All my love, Jo s

[tic chick]

hey everyone !

well, now it's been rainy, drizzly, cool and windy the last 3 days. so, i went to visit my mom yesterday.

she was talking about my sister being across the hall in another room in the nursing home. with a man. then she mentioned my father, something she hasn't done in ages. and i think she was kind of talking about me, too. she is jumbling up people and events and everything is becoming today for her...meaning she talks like this is all true right now. it's getting sadder and sadder to visit her. i bought her a purse and she thanked me. she is so polite. i guess once you have manners they always stay...they're deeper than your memories cause they are ingrained in the brain where no frikking tangles and plaques can get at them.

i'm wondering if my mom is in pain. she sometimes has this scrunched up face look, like you do when something's hurting you and you're just bearing it. i'm thinking of asking the doctor at the nursing home if he thinks doing another sigmoidoscopy (not as deep as a colonoscopy), to see if the tumor has spread, gotten bigger or gone through the walls of her bowel. then i think she might be in pain. i just don't want her to suffer and i think i need to know the status of this tumor to decide that.

i think when i didn't see her last week, the condition she is in just slapped me in the face again yesterday. as i said, i don't think of my mom's condition and how she's doing too much when i'm at home, otherwise i would be upset all day and i can't be that way.

cause i can't do a dam thing about this. i can't do a dam thing about this.

i am just bummed. i think that's why i didn't fall asleep last night until 4AM. i was like shell-shocked.

for all of you who have walked down this road, are walking on it now and will walk on it in the future...i offer my support.

cause it's so hard.

thank you for caring and sharing ,
jeannie