What's Happening in our Caregiving World?

[tic chick]

ging ,

you survive this journey one day at a time. just like your husband is.

you do the most you can on the good days and the best you can on the bad days.

you forget about yesterday because it is gone.

you don't think about tomorrow because it never comes. the only day we all have is today!

if you think too much about the future you won't be able to handle it. your hubby might lose his memory quickly, he might linger for many years.

73 is a bit early to get dementia, does your hubby have any other physical probs, like heart problems?

please forgive him for writing on facebook. impulsivity hits many people with alzheimer's dementia. maybe he was reaching out. i am sure somehwere he realizes you are having your own probs also. maybe he fears what might happen to you or what might happen to him if you aren't there.

if you haven't talked to a lawyer yet and you have a lot of assets (land, money, homes, etc.), you need to talk to one so that all your money doesn't go to take care of your hubby. there are many programs available for people caring for a loved one at home that has dementia. use eevery service available becasue you are going to need a break every now and then from all this stress....and it is very stressful.

i know you are scared and worried. feel all your emotions, they are all real and okay and valid.

i'm glad you have been lurking. now that you know us all a little bit you will see that all of us are here for you!

noone know's what their loved one's journey through alzheimer's will be like. as i said, live one day at a time and do try and reach out to other people and family so that you have a support system (besides us here ).

we will be here for you step by step!

thank you for sharing and caring,
jeannie

kat, it does my heart good to know you are still hanging in there! i also hope your dh isn't being a problem lately. i think about you a lot and admire how you take each day as it comes, without much distress. it is wonderful to have come to terms with your disease, whatever it may be. peace is priceless. *


kat

[Ging]

Jennie, my hubby, is diabetic, has had colon cancer, prostate cancer and skin cancer,he also has ulcerative colitis , he takes a Ton of medicine for his colitis, diabetes and the painful nuropothy in his feet. So him taking his meds on time is crucial I understand I can only do so much, then go to another room when he is in his mood.we are going to our sons for thanksgiving and we will all sit down and talk about what to do and when.thank you all for the many replies, only when you face a medical conduction first hand either as a care giver or the one with the problem can you truly understand another's pain , and Hurt for the care giver
good night friends rest Easy if you can , tomorrow we face a new day and hope for it to be better :) GING

[Buttons2]

Ging,my housemate is also 73yrs old. with several health issues & pills to take. I've been with him about 15 yrs so can certainly tell the difference in his personality & memory. you might need to insist on taking over his meds. and getting the financial aspects in order is a must. maybe make a list of subjects to cover when the family is together? do some research so you can answer the questions sure to come your way?

I'd forgotten about your annie,hope it was successful surgery & you will heal just fine. I'm sure all the "new" stress is NOT good for your own healing process so please lean on anyone you possibly can.

your DH has been through alot already and so have you! so you're a survivor & you are a strong woman. keep posting, this is a wonderful bunch of caring people here. (((hugs))) Pati

[Ging]

Thanks pati, he is revealing more and more everyday, and today I went into a funk,it's like I am outside looking in at all this unfold, my Sons are going to handle everything, because we live in a condo owned by our son, he rents to us, We lost our home (due to DH's )financial ventures that I did not know about. I am just trying to figured out what my role is going to be, I already have the verbal abuse, the emotional abuse, I just don't know where the strength will come from, but I will find it like I have done for years, I have all of you to hear me,and to know when I want to scream.
why can't they just be sweet and agreeable? It would be so easy to continue
enjoying the little things, like a cup of coffee on the patio, or dinner or a movie, but the anger and meanness I do not understand, any information from
anyone will be greatly appreciated ! :) GING

[Jo6]

Ging, first I want to tell you that you are already doing a super job. There are many things we can't prevent.

You can not reason with them, it's hopeless when we try. Maybe you can lay that one aside. I know what it feels like and you try to reason with them. That is sometimes when the meaness or anger will be greater than you would ever dream he could be.

There is no accounting when they can get violent. My MIL was the most loving and gentel lady I knew and the first time she just simply beat the crap out of me I was in shock I guess. I felt defeated and felt like I had screwed up my job of caring for her.

Then she all of a sudden started to cry and said "I have been mean to you, haven't I?" I just put my arm around her and didn't say anything. She was getting back in to the "could be violent" again so I walked beside her but kept a safe distance.

Ging, that was just one instance and we had already had to place her in a Nursing Home. At home she came near to hitting me or shoving me and then kind of laughed. It was all so confusing. From then On I kept a safe distance from her but didn't show I was afraid of her. She would be so sweet to Ken, her son, when he came in and he was perfect to let her tell it.

The group here were a blessing to me. I would always wonder if she knew what she was doing, but every thing I read or heard was to remember, she couldn't help it. It was the Disease. I would just be watchful because he could suddenly strick out and you wouldn't even see it coming.

MIL was stronge as an ox! I guess the main thing is try not to reason with him. If you have to change something just do it and not say anything to him. Sometimes it can't be helped. I wish I had the answers but I haven't. Everybody does different.

Your sons are close, use them to help you. they may not know about the anger and meaness. If not, tell them. They need to know this too. It sounds like they are willing to help in whaever way they can.

You and your sons will have to decide if he needs to be in a Nursing Home. Your husband won't agree to it, but you will have to figure out how to do it. It won't be easy.

I feel sad to tell you all of this. You care greatly for him and this sounds so differant from his norm. Everything will change. We just don't know how and when.

May God bless you Ging. We will all certainly pray for you and your family. If you don't want prayers please tell us so. My heart breaks for the small thing you have enjoyed with you husband. I wish I could tell you it would get better.

my love, Julia

[tic chick]

hey everyone !

ging ...julia is completely right. there is no explanation why one person with alzheimer's will "go quietly into the night" and another will go kicking, screaming, cursing and hitting. some say that a person's basic personality traits are magnified when they get alzheimer's, but that explanation isn't alway's true, as i know julia's mil was prolly a sweet (or close to sweet ), person before she developed alzheimer's.

yes, do tell your son's. they need to know this to realize the urgency of getting some kind of help for you and your hubby. jan has also mentioned her hubby with alzheimer's has a mean streak in him. i know she has had a hard time adjusting to it. jan, i hope you're doing well if you're having that surgery now .

remember ging...it is easier to get your husband into a nursing home WHEN HE IS IN THE HOSPITAL!! if he get's the flu or has some kind of other health problem (i know you mentioned a few), and winds up in the hospital, then whoever has power of attorney for his medical affairs can tell the nurse that he can't come home. you would see the hospital social worker, who would write down the problems your hubby is having. they would look for a nursing home for him while he is in the hospital. this is what i had to do with my mother. so, start getting all your paperwork in order and talk to an elder care attorney so you can use as little of your assets to pay for your hubby's care. it's good your son's are there to help you.

so, i visited my mom on thursday. she was talking just a little bit, but i talked to the man who was sitting by his wife's side in the same room as my mom is. i asked him how his wife is doing and he sid she slept for 5 days a few weeks ago. she had something wrong with her as they were giving her an iv with meds in it. he told me my mom was getting around a little more the past 2 weeks and that she seemed calmer at night. he says that she sings polish waltzes in bed,,,all the way through without stopping or repeating any parts. DARN IT! i knew i should have gotten my mom a radio a long time ago, but i'm looking for one that maybe you can press a button and it has about 6 pre-set stations. i can't get anything digital or complicated for my mom. i think even a tuning dial would be complicated for her now.

anyway. i am getting quite fond of the man who visits his wife that's in my mom's room. not romantic fond, just compassionate fond. he sits by his wife's bedside everyday for hours...sometimes even at night. his wife doesn't talk anymore...sometimes she tries, but nothing intelligible comes out. she smiled at me once when i said hello to her and called her by name. she is so pretty and dying at age 62. it makes me sad for both of them. he is so loyal and just there for her even though she maybe doesn't know if he is or not. but she responds to him stroking her hand.

i went to my niece's wedding today. it's my brother's daughter. i had a nice time, just got home a little while ago, but i'm so tired cause i was up early and i had my usual 2 drinks...lol

ging, please feel free to express yourself anyway you want to here. you can be sure i've had my share of rants and breakdowns here also...and all these lovely people were right here for me. i will remember them forever .

thank you all for sharing and caring,
jeannie

[Jo6]

Jeannie, I marvel at the way you are handling things with your Mom. Being close to her roomates hubby is good. I know many were friendly to me as well as Ken. They always acted glad to see us. Then many of the Ladies that could get around or sit in the day room would get a bit upset at me because I always left with Ken. LOL I was about ready to give him to them. .

Mary loved music and when she could still get around she still loved to dance. Yes, she was a very sweet lady until Alzheimer's took her away. She had to give away so much, couldn't move or talk for over 4 years, so you see, sometimes the LO can be light and laugh a lot, and they don't linger on for years. Poor Mary was Dx-ed over 12 yrs. before she finally found some peace.

Ging, Jeannie is very good at explaining things and she held me up when I could not stand anymore. For that I will forever be grateful for her love and kindness. I hope you can find some answers soon. You may need to talk to sons before Thanksgiving. Depending on how fast he is declining.

Jan, if you can read I hope you know we are all thinking about you and love you very much. What you have been thru will take it's toll real fast. I pray all is going well.

My love to all of you fine people. The ones that post here was with me every step of the way. For that I an thankful. they are very special people. We are here for you too. Just spill your frustrations when ever you need to.

many s to you all

[Ging]

Thanks Jo, I have learned much and yes he does seem to be sliding faster,I don't know if it's because he knows and doesn't try to hide the things that happen.
(like having to buy a map to get home from the doctors, all he had to do was touch the gps for home), he now tells me about things that I don't see happen, as do the neighbors !
thank you all so much, I also posted on the emotional forum, I was so stressed. I also go to my aneurysm forum to try and give support to any one there. It has been hard to digest all this, but I will keep coming back here and gather your stories and first hand experience. Everyone have a nice day and many grateful hugs to you all.
GING :)

[Buttons2]

Ging,is your DH a veteran by any chance? you haven't "met:
" Jan yet but she's made plans for her DH to go into a veteran NH when the time comes. guess what I'm thinking is the wisdom of having a plan made BEFORE an episode occurs where you need to take action ASAP.(such as violent behavior).

hope your son's are doing some research & will be prepared for helping you. the fact he's still driving could change overnight,so please make alternative plans for your own needs.

you mentioned sitting on the patio having a cup of coffee? well don't deny yourself life's simple pleasures! get to know your neighbor's. reach out to anyone with empathy.

since I'm familiar with diabetes I hope you keep a close eye on his blood sugar level's. getting too low can also cause a personality change,even rage. I try to keep cheese,banana's,etc. always on hand for a quick fix. my housemate will lie through his teeth about when he last ate & when for instance. (or simply can't recall).

for what it's worth to everyone reading this: I found out recently that people with Alz. should not be told of death of a family member,etc. it serves no purpose except to upset them. a local woman's DH died just before their anniversary,the NH staff didn't tell her,instead they had a party & she enjoyed that.made perfect sense to me

Jeannie,glad you have made friends with someone visiting the NH. hopefully it helps with the dread you must feel everytime you walk in that door.

[Ging]

Thank you buttons2, I had not even thought of a veterans home, yes he is a veteran but of the cold war, the VA seems to take away so much from the vets it seems now.
DH was in a classified area of the Army.
Our Sons will defiantly take the lead and protect me at all cost. Today he seems "normal"
Today he told me he can't pee ! He has an appointment with his cancer Doctor on Wednesday.
I keep thinking Vascular Dementia, since he is Diabetic, but we will see! Thanks to you all, for being there
I just did not know where to start to learn about this., goodnight , rest well :) GING

[Buttons2]

Ging, curious what made you think of Vascular Dementia? we have a BT member diagnosed with that years ago. her name is Kat,she seldom posts anymore but if you go into the archives you can read about her story.she's rather amazing actually.

glad your son's will help you.

agree totally how the vets are ignored/blocked from services-shameful!

well take all the "good" days you can get!

best to you Ging (((hugs))) Pati

[JanM]

Thanks for all the concern y'll have expressed. Hank memory is continues to get worse. I never know what will get him angry. One minute I'm the worst driver and he will never ride with me to , "You are a good rider." I am going through a major medical situation. ......... OK, I am being evaluated and tested for a kidney transplant. And sometime my stress level gets a tad high. While at the class, Hank kept asking me where we were and why we were there. Of course the wait times was confusing for him also and I was the last one to get the blood drawn and the last to see the social worker, in fact, she had to leave before she could have a chance to talk to me. I drove 2.5 hours to get home in time to drive another round trip of 130 miles for a doctor's appointment.

I checked in with the clinic's receptionist at 1:45 for a 2 pm appointment. At 3 my cell phone rings and it's the nurse reminding me that I had a 2 o'clock appointment and asked where I was. I told her "in the waiting room, I've been here since 1:45." Hank had wanted to watch the TV and our backs were to the patient's door and she didn't see us.

[tic chick]

jan ....i'm just leaving to go see my mom, but i just wanted to give you a (((((BIG HUG))))).

i know you are a tough cookie, but sometimes even cookies crumble>

will post more later!

jeannie

[Buttons2]

wow Jan,never in a million years would I have guessed you needed any transplant. that's serious stress I'd think.

some nurse! couldn't she have called your name out?

well at least your favorite team is still winning! I always think of you when watching the Packer's.

what happened with the thyroid issue?

get out there & walk that cute doggie! (((hugs))) Pati & thanks for taking the time to update us.

[JanM]

wow Jan,never in a million years would I have guessed you needed any transplant. that's serious stress I'd think.

some nurse! couldn't she have called your name out?

well at least your favorite team is still winning! I always think of you when watching the Packer's.

what happened with the thyroid issue?

get out there & walk that cute doggie! (((hugs))) Pati & thanks for taking the time to update us.

I don't have a thyroid issue, Pati, I have a tumor on my Pituitary Gland. It is just sitting there being very quiet and not causing any growth hormones to be produced. Blood tests will monitor that for now.