What's Happening in our Caregiving World?

[tic chick]

hey everyone!

i went with my sister to see mom today. my sister is having a hard time after visiting mom, she always goes by herself to see mom. she's been sober 6 weeks now and visiting my mom is a trigger for her to drink. i guess it would be a trigger for me to eat too, if i ate to push down the bad feelings, but i pretty much have that under control the last 6 years. i keep telling her to keep repeating my mantra, "there isn't a damn thing i can do about mom. there isn't a damn thing i can do about mom." maybe she needs to find her own mantra .

my mom had her eyes half closed during our visit, but she seemed to be bit more alert today. i wore a bright coral pink sweater and she reacted to the color. i always try and wear something colorful just to see if she notices things like that, but it's harder to do in the winter. mom also said something about "your father" (meaning my sister's and my father), but the rest of what she said was unintelligible. it's interesting, in a morbid sort of way, how the brain works and doesn't work in alzheimer's. she might have remembered that we have the same father, but not understand the concept of "being sisters", or she might know and just not be able to say it. it is so frustrating, but then she switches to talk about something else. she doesn't stay on one subject very long. mom also smiled and laughed today when i was cutting up her food. i laughed too, even though i didn't know why, it was just nice to see and hear her laugh.

my mom is preferring to eat with her hands instead of with a fork and spoon. i think that's another sign of deterioration.

my mom doesn't appear to be in any great distress...she doesn't have that sad look about her and i think it's because she's remembering less, so it's not as frustrating to remember something and not know how to say what you want to say. she's just not remembering much anymore.

so, with all the work i've been doing around here, i don't feel guilty if i don't see my mom every 2 weeks. i'll have more time in the winter.

i don't know if i feel resigned to this, whether i have accepted it, or whether i am comfortably numb.

great news about the weight loss, karen! i'm sure feeling better is a great incentive to keep it up and off !

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

[joy]

so glad your sister could go with you to visit mother. and it was good to hear that you and mother had a laugh. i believe i'd have had to laugh as well because it would be so unexpected. better laughing than crying in my book for sure. you take care and i hope you get to stay busy. down time zaps happiness out of anyone so keep finding things to do and try to not have any accidents.

[Jo6]

hello everybody. I'm always glad to see new post here. I know for some it is getting to the point of total confusion. Yes, it is heart breaking to here your LO try to put words together. I always wondered how much Mary understood what she was trying to say.

Jeannie, you have been in this living hell all alone for a long time. It is very kind to go with your sister. It's too bad sis hasn't kept up with all the daily goings on. I hope she will keep her vow of not drinking. Sometimes I felt like getting rip roaring drunk, but nothing will take away the heart ache.

I hope you are getting enouth rest and taking care of yourself. ((Jeanne))

y coputer s not working right so I'll just say my love and prayers to all of this group. I love you all! Jo s

[tic chick]

hey everyone !

i went to see my mom last tuesday with my daughter.

my mom's room was getting a "deep cleaning", which means everything is moved and cleaned and the floors polished. so my mom was sitting in the dining room and she had just finished lunch. i sat next to her and it took her a bit to notice me. then smiled at me said, "oh, you". then she looked at me and touched my hair. she smiled and said, "nice" and i think she wanted to say more. see, i have been getting my hair colored lighter the last year. i have so much gray, that now my hairdresser can put a copper blonde color on my hair in a one coat process (if you click on my name and then click "view profile", you can see my latest pic). so i'm wondering if my mom knew that it was me and she noticed that i didn't have dark hair anymore or if she just noticed the color, cause it is quite bold.

so, another question in my head about what my mom remembers. we visited for awhile, then i had to go to a doctor's appointment. i got my flu shot.

i read an interesting story the other day and i posted it in another forum, but i will post it here also, because i think it might be helpful to some of you:

recently i was asked by the social worker at the nursing home where my mom is, to sign some papers agreeing with the decision to end physical therapy for my mom. they said she was no longer benefitting from the therapy and medicare wasn't going to pay for it. so, i signed the papers half-heartedly, because i know my mom will not recover from alzheimer's disease. however, i felt that the process was at least keeping her moving and allowing her to have interaction with the staff and other's. she always liked the attention she got when she went to physical therapy and i think even that is beneficial.

today i read a story on msnnews on the internet saying that a lawsuit had been settled that says,

'Medicare would not deny skilled nursing care and various forms of therapy for beneficiaries, regardless of their prognosis.'

the story further stated that,

"Under the agreement, which amounts to a significant change in Medicare coverage rules, Medicare will pay for such services if they are needed to 'maintain the patient's current condition or prevent or slow further deterioration,' regardless of whether the patient's condition is expected to improve."

for further info from this story and how it might impact those with ms, parkinson's disease, alzheimer's, chronic lung disease and even the elderly who are getting weaker and young people with disabilities, please click on this link: Only registered and activated users can see links., Click Here To Register...

i hope those of you who have been denied access to maintain your current physical status will be able to once more get help

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

[mrsQ]

I have moved out. It is the only thing I could do, mrq would not get more help or place her as long as I was willing to stay. There were tons of other issues beyond MIL. I'm actually back this weekend because he did not get a sitter but I'm leaving in the morning. I'm staying with my folks for now & don't have internet up there yet so I'm not online much.
MIL is suppose to start getting a sitter in everyday with the respite program. Between the bad marriage,the back and I'm pretty sure something in my shoulder is torn I just couldn't deal with the no sleep for weeks at a time. It was to the point I was throwing up due to my blood pressure being so high, and I was taking 3 medications for it. My doctor said it was just stress and exhaustion,,,the reason she gave for the fact that my hair is also falling out.
I feel like a real witch for leaving but it was get out and get some rest or have a stroke myself & don't have anyone who would take of me.

I hope your all doing ok.

[tic chick]

((((karen )))),

karen, i just marked my first year of separation from my ex on 10/21. a week ago.

it is never easy to leave. you keep thinking the person you love is going to finally realize that he is hurting you and not caring about what he does. it doesn't matter the situation, it matters what is happening to you. karen, please do not feel like a witch! you are just a human being who can only do so much until you put your own health in peril. if you had that many problems from being the sole caregiver to your mil, it was time to leave before you completely fell apart.

take this time to heal YOU! get your shoulder looked at and your blood pressure under control! dont' worry about mil (although i know you care for her greatly). your hubby will now have to do what he should have done in the first place, which is to get some major help with his mil. see how long HE can take care of his own mom for 24/7. i'm betting not long and a swift realization of what you were going through!

stick to your guns if your mil was not the only issue in your marriage!

i truly empathize with you and i wish you healing and thoughts and plans for the future.

we are all here for you, remember that.

take care of yourself karen,
jeannie

[Buttons2]

well good for you! hope you get some much needed sleep now & please don't feel one bit guilty over moving out! one person cannot do it all & as long as you were there to do it everyone ignored your needs it seems to me.

good luck! hope better days are ahead for you.

[Jo6]

((((Karen)))) I'm sure you did not make this move without giving it much thought. I have worried so about your health problems and I was so afraid you were doing yourself much harm.

mrq was willing to let you do such things as picking MIL up and I know she had lost a lot of weight, but even 70 lbs. of "dead weight" is hard for someone in good health.

You just take care of yourself and let the health care people take care of MIL. That is why they are there. I'm proud of you for taking that step so you can get a good nights sleep and take care of your own self.

You just take care sweetie, Julia ((((Many Hugs))))

[Jo6]

When I don't see any new post for awhile I worry things aren't going well with you, the caregiver and or your LO.

Pati, I found the thread you started for your Mom. If you want to bring it back up it can be done. Let me know, ok? I wouldn't do anything like that without you permission.

I hope things are going better with Karen. She surely needed a break. ((((Karen))))

I know there are many times you just don't feel like posting. Your LO's stay on your minds no matter what. Take some time for yourself, enjoy life as much as possible because it flies away very fast and you find your self in a bad situation. I'm not sorry I took care of MIL, but I am sorry I didn't take some time to enjoy a little life.

Any word from Kat? Mrs.J and several others I'm missing? I pray everybody is well and not in this gosh awful weather.

all my love, Julia

[Buttons2]

Jo, you can bring the thread back up if you want. I do a good job of putting that situation out of my mind. she did call again last week & I got so frustrated she wouldn't talk into the receiver so I could actually HEAR her I cut the call short. I know I'm mean. stress with housemate is all I can handle these days. have to accept what we cannot change afterall! and pick our battles. afterall I don't think/remember as I should myself!

Karen,it occurred to me you might have gone back to Mr. Q? if so please don't be afraid to tell us-we will understand! if not then sure hoping you are learning to live a new life & have some real support this time around. remember we care & will always be here for you no matter what!

Jo, you're not dead yet so maybe think of how to make the best of time left & what little things you can do for yourself to bring joy into your life? you haven't mentioned Ken in ages so hope he's letting go of the past & treating you as you deserve!

Jeannie,nice that your sister & your daughter are taking you to visit your mom. you are wise to limit the visits in my opinion. you are a forward kinda gal & I admire that. keeping busy & living your own life is sure better than a life of misery anyday.

my neighbor that was diagnosed with Alz. is still driving his truck every morning. I've forgiven him for wacking down the greenbelt a few years ago now that I know he's probably not been thinking straight for years. it's just sad & his wife isn't well either.

I do try to keep up with any news on Alz. research I come across. most of it I find to be a waste of time/money. scary statistic's in fact. and of course every situation is different so trying to box it in with facts doesn't mean much to those suffering to my way of thinking.

let's try to keep this thread going! thinking of all of you & hoping your lives are going OK. (((((hugs to all)))) Pati

[Jo6]

OK Pati, it may be a little later, but I would like to do this for you. You can also write about HM. Its easier to keep up with even just little things sometimes.

Yes, I think we do need to make sure this Thread stays currant, more or less. Have you seen how many veiws this thread has? We never know how it may help people we don't even know. I was amazed when I saw the count.

Alzheimer's Disease is truely the disease from hell. I keep praying they will find a cure or at least something that would help the patient have some quality to their life.

I know you all have kept me sane more than once and helped me when I could no longer walk. Yes, I am thankful for the Alzheimer's Forum.

talk later dear ((((Pati )))) Jo s

[mrsjerome]

Mr J finally had those teeth removed. They extracted something like 7 or 8 teeth. It was done in a hospital setting. He went through it ok. There were no glitches this time around.

At present he is about the same. He has his good days and bad days. I have not seen any decline lately and he remains fairly stable.
I visited him at lunch yesterday. He has the sniffles so likely a little cold but otherwise seemed somewhat alert. Of course at times, his mind wanders off and I have to nudge him to get his attention.

We had the sad news of our niece (this is mr J’s niece his sister’s daughter) pass away. I wrote about it in the emotional forum.

On this forum see the younger gals taking care of their mothers or mother-in-laws. How strange is that for my elderly sil to be caring for her daughter?

Hope all are doing as well as can be expected. Sorry to hear of Karen’s split with her husband. A person does what they have to do. It is a bummer that when we get to older age that a golden retirement that was envisioned when we were younger does not turn out.

Well all take care

mrs j

[Buttons2]

oh thanks for writing Mrs. J!! been wondering about you & Mr. J. good the teeth extractions are over with,and so sorry to read about your niece passing.

thanks to you Jo for being the thoughtful caring friend you are.

[tic chick]

hey everyone !

last time i saw my mom, she was sleeping. i think she had just gotten her after lunch pill and i was a little too late to visit while she was still up.

i got a call from the nursing home saying my mom had gained 5 pounds this month, also that her doctor's were going to recheck her thyroid levels and do some other blood tests. the nursing home is calling about all these little things that happen to the patients because they HAVE to! finally, someone got thru to them that we can't be kept in the dark about what they are doing to our loved ones.

i have decided to put off doing anything about the basal cell carcinoma's on my mom's face until spring. my sister said, "oh, let's get them taken care of in a week or two." fine for her, but i have to arrange everything and i don't think this is a life/death situation that can't wait and the dermatologist told me that, too. i have just been doing so much lately and finally i am relaxing for a bit before the holidays start. i have to clean up the tools and other stuff from the yard and put them away. i'll prolly spend today doing that, as it's supposed to be in the 50's. nice weather, no rain lately, sunny.

so, i read news about our mrsq (karen) in another forum and she sounds quite happy . i'm so glad for her. i remember tootsie and how her severe scoliosis never prevented her from doing what she wanted. she went swimming, she gardened, she did the worm composting (i still wonder at having a bunch of worms in your house under the sink, but they didn't go anywhere else...lol). she just had such a full life! yes, life sometimes isn't always happy in everything, you will have probs, sometimes things will turn upside down for you, but life is such a great gift and finding your own happiness is always the key.

i want to thank you all this thanksgiving week, for i am so greatful to have you all here and all the support and caring you give!

thank you julia, pati, joy, karen, mrsjerome, ging, jan, and all the others who contribute here on occasion!

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

[Jo6]

((Pati dear)), you are doing a good job of taking care of all things on the home front. It has to be hard, never knowing when it will raise its ugly head.I certainly don't want to add to your stress and worry. BTW, you are NOT mean! You are kind and loving to all those that care about you. When the dementia starts we just have to deal with it the best we can. I see you doing that and I'm proud of you.

None of us are the same as we used to be. I forget things, sometimes I think it is Ken that forgets, so I just let him run with it. Yes, it gets hard, but as you say, we have to chose our own battels..We can't do it all.

You asked about Ken and asked how he was dealing with the death of his Mom. I feel he has made great strides in putting those feeling where they belong. Yes, he has been much better to me. I think I finally realized some of the things that was troubling him. Once he had taken care of the things his Mom asked him to do he was much relieved. He said" well, I've done my best to do just what she asked of me. She doesn't need me anymore."

He bought the mini-van, paid cash for it and I was wondering where he got all that money. I surely didn't ask him. then one day out of the blue it hit me, he paid for it with his share of his Mom's estate. He also took 2 thoundsand 500 $$ and gave each one of his siblings that amount, each. Money that had come to him, but he shared it with them. He didn't tell them where the money come from. Over 12,000 $$. After all of that he has been a more gracious person. So, I can say he is much kinder to me.

I am worried about his health. After 3 rounds of antibiotic's our Family Dr. is sending him to an ENT come Friday. I have no idea what they will be looking for. I guess we will know Friday. Please send some prayers his way.

Mrs.J, I was very happy to see your posts. Now, you make sure you take care of yourself. You've been thru a bunch of crap and now it is time to pat yourself on the back and try to enjoy some things. Mr. J has also been thru a lot and I'm praying he will level out and find some peace also.

Karen, I'm hoping you are getting on with your life and enjoying it. The Party thread in Spinal issues is a good place to go and I want to get back to going more often.

Donna, I thank you for sharing with us here in Alzheimers Forum. You are kind to do this and I know you have your own hands full. I send up prayers for you and all your family, children as well as you.((Donna))

((Jeannie,)) I hope you are doing well. I know the holidays will be hard. Enjoy the best you can.

Joy, Jan, Kat and many others that I miss, please take care and have a safe and Happy Holiday.

My love to all of you and have a very Merry Christmas.

all my love, Julia s