What's Happening in our Caregiving World?

[tic chick]

hey everyone !

i've been feeling sort of depressed this past week, which is unusual because i haven't felt this bad all winter and it's so close to spring and usually by this time i feel pretty frisky .

i don't know if dealing with all my mom's stuff has done it or dealing with everybody's stuff including my own has done it. maybe it's just everything. i even have a date this saturday and i'm not excited by it....what's up?

i went to see mom today, she was laying in bed. i think they had given her an anti-anxiety meds because she seemed half asleep. she asked me where my sister was and she called her by the nickname we gave my sister when she was 2 years old. she keeps talking about her mother...said she wished she could talk to her.

isn't it odd that no matter what kind of relationship we had with our moms, we seem to want them when we feel bad or in trouble? i am sitting here and crying because i dont have anyone who loves me like a mother would, i don't think i ever did and i never will now, for sure.

it just sucks. maybe that's what i need is a good cry. i haven't cried in weeks. i am going to a party with old friends tomorrow, i hope that cheers me up. i don't know what else to do.

nice to see you back, karen! as i was mentioning in a previous post, there is always a department in your state that takes complaints about nursing home abuse or bad treatment of patients, if you care to go any further with that. the nursing home would be given a violation. it is hard taking care of a loved one at home. i had my mil here for awhile. i found a good sitter through a recommendation, not an agency. sometimes asking your friends if they know someone who has done that might get you a nice person who really takes their job seriously because they really need the money. i hope to see more of you here .

well, that's it. late here. shopping tomorrow.

thank you all for sharing and caring ,
jeannie

[Ging]

Jeannie, I understand your feelings about having a mothers love and and her comforting arms to hug you! I had a mom,but she rejected me from the beginning and yes, no matter how old you get if that part of your life was missing it leaves you vulnerable . Honey I am starting an uncharted journey with my husband, he was diagnosed with major clinical depression and high risk for dementia, he has to be under a psychiatrist care with medication monitored! This is early, he is even considered a sucide risk, so I don't know where this will lead me, so yes I wish I had a mom to cry with to, I am so glad you all are open about feelings, because I don't feel so lost with this .I don't sleep very much , Honey try to do something for you a little feel good therapy to help you recharge your spirit , I will hold you and your mom in my prayers. (((hugs))) GING sending you a smile to start your day :)

[Jo6]

dear ones, I think the hardest thing for me was the day I realized my Mom had become the child and I had become her mother. That was a huge burden although I would have moved heaven and earth for my Mom.

My heart aches for all of you, you are going thru some very trying times. Everything in your life has turned upside down with no hope of it ever getting better.

You are all my friends and I love each of you in a special way. If you need a shoulder to cry on, here are my shoulders. I have leaned on y'all so very much and it is time I stood up and helped ease those burdens.

I want all of you to feel free to lean on me when you aren't strong. Together we will find a way to help us carry on. It helps me to be here to help each one of you.

I love you all, Julia s

[tic chick]

julia and ging ,

i slept late today, i probably needed it.

and then i come here, and what do i find but words of care, love and encouragement. that is why i love you all here at bt, cause you are here!

thank you for being here and caring and your shoulders to cry on and your smiles to start my day .

jeannie

[mrsjerome]

I just don’t know what to say or even feel anymore. I don’t know if it is worse dealing with a parent, spouse, or loved one. Is there a difference? Does it make a difference if it is a man or a women? I often wonder about that too.

A person just thinks too much at times. It seems always something coming up. You think you cope with one problem and then another finds its way to your door step. I guess that is called life.

I really wish I could go back to happier times but realize those times are gone for good.

Anyone posting here has gone through or is going through some very difficult times. I think all are dealing the best in your own set of circumstances. There really is no right or wrong. We all cope in different ways.

Please all take care of yourselves.

mrs j

[mrsQ]

I hope everyones weekend is going ok so far.
We had a sleepless night around here so I'm dragging to day but nothing major to do anyway so that is good.

We did file a complaint with both medicaid and medicare. We had to they had thrown her wheelchair out, it was only a couple of years old and you can't just get a new one for what is it five years. They did not tell me the chair she was in was not hers until I was heading out the door with her the day we discharged her. They got so nasty about stuff like giving us her medications even the local drug store in town was trying to ger involved. It was a major ordeal and has hard as it is it is actually easier to have her at home.

She is so much more alert. I thought she was pretty much in a coma state but since she has been here she will say a word now and then, she watches tv and loves to watch the cats. We even discovered that if we read out loud to her while feeding her she will eat much better. I think they may have been giving her something at the NH to keep her knocked out.

Hope your all having a good day.

[Jo6]

Oh Karen, you have such a burden and the NH is not doing a dang thing to help. I'm so sorry for that.

I'm wondering why they threw her wheelchair out? Ken saw one out near the dumpsters one day and he asked about it. They said it had a tare on the side, or some such nonesense.They were fixing to haul it off to the dump. He asked if he could have it and they said they didn't care so he brought it home!

I'm not in a wheel chair~~not yet, but we gave it to the beauty shop across the street. I had noticed she fixed some of the patients from the NH across the street. she was delighted to have it. I do not understand Anything about NH's!!

You take care of yourself, Karen. I know this is hard on you. Just don't let it sneak up on you and have YOU flat of your back. You are one loving caring lady and I know you are loaded down. Just be careful.

my love, Jo

[mrsQ]

Thanks for the concern Jo.
They threw hers out so they could bill her for using one of theirs just another way for them to make a dollar. Just like having her on more meds than she needed or sending her to PT to watch someone else put pegs in a board once a week while they let her not move her arms the entire rest of the time.
I have a sitter M,W,F from 8- til the afternoons, and on Tue/Thur an aid comes by to do a bath & Mr. Q helps out feeding her several days a week. The sitting by her bed feeing her is the worst back wise because it takes a long time. But we are making it.
The biggest thing right now is she is having lots of pain due to her legs trying to contract up like her arms have. I just hate seeing in he pain because there is so little we can do.

[tic chick]

hey everyone !

mrsjerome, it is hard to know what to say and feel sometimes. i don't know if we have any control of our feelings. i kind of think of feelings as "the weather in our soul", that way i can go with the feeling of whatever "weather" it is that day. we all have different relationships with people; our parents, our children, our spouses. with a disease like this, i guess it's the kind of relationship you had with the person who is now ill. i just want to say no feeling is ever wrong! i usually can handle most feelings, depression or the blues are the hardest for me to handle. that's when i start to do something to get out of that feeling because i hate to be depressed. julia is so right about keeping yourself healthy and emotionally stable, i think handling things when you aren't well is so hard .

karen, it does sound like your mil was on some kind of med in the nh. i'm glad she is better with you. i do hope you get some help because i'm sure there are times you need to get away from the house for some reason. i do hope you and mrQ are doing well !

julia, i am always so happy to see you posting here with your wise and caring advice! i'm glad even though your journey with mary is over that you are still here to help us on our journey's .

ging, we are always here for you too, if you need to vent or express your own feelings about what is going on with you or your loved one !

i went to see my mom today. i was in her room talking to the man whose wife is in the next bed. i told him about the staff telling me my mom was getting somewhat violent and he said he had noticed that already. i told him i would hate for my mom to hurt any patient and told him i wouldn't be offended if he wanted to move his wife to a different room. he thanked me for my concern and said that he had thought about that, but right now he doesn't think my mom is a threat. we both agreed she could get worse and then things might change later. he is such a funny and realistic person.

well, i asked the nurse today if my mom had behaved better this past week and what they did with her med dosage. the nurse said she had maybe 2 bad days and her med dosage was upped, but they were still giving it to her only when needed. i said i wouldn't have any objections to her getting it around the clock. i got a call from the nurse when i came home and she said that the psych doctors had been there and they finally put my mom on the med dosage every 8 hours, instead of just when needed, but they have to watch her for excessive drowsiness. i wish they would put her on a longer acting drug, then they could avoid that excessive drowsinees that a fast, but short acting anti-anxiety drug gives. we shall see.

while i was talking to the man about my mother, mom came into the room in her wheelchair because she had been in the dining room eating lunch. she said something to my husband about taking something from her room, but she didn't know what. she asked if her mother was still around and i told her she was at home. so, i guess my mom still kind of knows i am part of her family, but she doesn't know exactly who i am anymore. she got into her bed by herself and went to sleep within 10 minutes, so we left. it wasn't a long visit with her...i'm thinking that's probably how it's going to be from now on.

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

[mrsQ]

How are you all doing?

We are still making it day by day. The sitter helps but the days I don't feel up to going out are a bit odd since this is not a large house. Some days my mother in law will smile or say a few words then other days she pays attention to nothing.
Hope your all taking care of yourselves.
Karen

[Buttons2]

hope when the weather is warmer you will feel up to getting out more. perhaps one of these sitters will become a friend? good to have a post from you!

just found out yesterday someone I knew years ago has Alz. this really upset me. I worked with her DH for 2 yrs. he's her caregiver & he's 85yr old now.

will share something at end of the article: one night he put her to bed & she looked up at him and asked who he was? he said "I'm Bob". she said "that's an odd name for a woman." Bob said he didn't know whether to laugh or cry.

just breaks my heart. one of the most wonderful couple's anyone could ever hope to meet. she went to law school when she was 60 yr old! both total health guru's too. go figure!

[Jo6]

We never know do we, Pati. Alzheimer's D. is no respector of persons. Karen, I do hope you aren't wearing yourself too thin. You have got to get out and away from it all now and again.
I know you don't mind helping your MIL, but you have a breaking point also. I worry you aren't taking care of yourself.

Mrs. J., how are YOU doing? I know the last news was not so good concerning Mr. J., last time you posted. I hope he is doing better.

Jeannie and Jan and Ging, I hope all is as well as possible for all of you. If I missed someone I'm sorry. I mean everybody that comes here. Kat, we miss you and I'm glad you had a good Drs. visit concerning SO. I hope that will be settled soon for your sake!!

Pati, you take care too. You have a boat load of people you care about that aren't well. you take care of Pati too!!

I love you all, Jo

[joy]

sad (85) but what eats at me is when you know it is starting and getting bad on younger people. I am thinking of hubby's co-worker whose wife had cancer and survived it only to get arthritis plus alzheimer really bad and still die young. All the things no one wants and to me the alzheimers on top was the cruelest it seemed. but i know there is not one thing to blame. just really hate alzheimers for everyone involved. and yes, i know it was probably years of it but not in 60's probably the woman I spoke of was younger than that even.

[mrsQ]

I came across a man on another support group whose wife is 40 and was just diagnosed, they have two very small kids. I know with more people living longer that is part of the cause but something is causing younger people to be effected. I often think that many causes of dementia symptoms are getting put under the AD umberella but they are not all the same.

We are making it ok. I now have the sitter MWF for 7 hours and then the aid comes in M-F to give her a bath so that all helps. This sitter is nice but I'm fixing to have to say something to her about just letting MIL sleep and not pushing her to drink and eat. MIL is loosing weight and she doesn't have any extra. She will eat but you have to encourage it and she isn't doing it and the hours it takes me to do it is one of the reason I wanted her...I really don't ''need'' someone to sit and just watch her.
I have never been going at telling anyone else what to do,,,I may push it off on mrq to do. lol
Hope your all having a good day. I am going to go try to get out a bit today.

[tic chick]

hey everyone !

karen, i also read an article in our newspaper about a man in his 50's getting dementia. i know there are about 7 different kinds of dementia, but i think that by doing tests they can pretty much eliminate most of them and give a person the diagnosis of alzheimer's dementia. there is am inherited form of early-onset alzheimer's dementia in some families, but sometimes it seems some people get it early for some other reason, maybe a genetic mutation? i don't know. it's all so sad.

i'm happy you have a sitter that's nice and that you can trust. karen, i think weight loss when you have dementia is pretty common. your mil's body is shutting down. if you sleep a lot, you don't really need to eat that much, since you're not burning any calories. i think you can tell the sitter that your mil needs to eat more when she is awake, i don't think that's a confrontational issue. she is being paid to do what you want her to do for your mil. i don't think waking her up to eat is a good idea, but that's just my opinion. however, when she is awake giving her high-caloried foods and protein might keep her weight steady. you can let full-fat ice cream almost melt and have your mil drink it. scrambled eggs in butter mixed with cottage cheese is high protein. macaroni with cheese is starchy carbs with protein and fat. i think stouffer's makes a good line of frozen food with a higher calorie count. your mil might have swallowing issues, so softer foods are better. i hope you get some enjoyment going out today !

i didn't see my mom last week. i don't feel guilty. i have been living at home depot, figuring out what i'm going to do with my kitchen and trying to get what i want (or close to it) at a price i can live with. i have my life to live right now and if i can't see my mom, i just can't. i'm not going to burn myself out trying to take care of everyone's needs. there is so much stuff going on in my life, physically and emotionally that sometimes i feel overwhelmed. i'm seeing my therapist more often to get through this particularly hard time.

i can't change anyone but me. i can't change anyone but me. yes, i know i wrote that twice, i'm not yet .

thank you all for sharing and caring ,
jeannie