I'm the primary caregiver and sometimes it gets very overwhelming. I just need someone to listen.

We are doing ok, Roxie. My mom is pretty stable. I have to constantly monitor her lasix to keep her congestive heart failure under control ~too much and she is dehydrated, too little and her lungs get congested. I have had inservice for school all week. It is really boring, BUT it gets me out of the house and around people that don't talk about bowel movements.(lol) How are things with your mother? and you?

Is everyone else ok? bwthrs- hanging in there? lisalives? Remember, take care of yourselves!
Brenda

The paperwork - isn't it horrible? And it never seems to end. That is one of the hardest things to handle, sometimes. I layed away nights worrying about stuff I really didn't need to worry about, but it's hard.

Sometimes siblings or children that won't do hands-on care, will do some of the paperwork, but often you can't even get them to do that. As in this case, if no one will accept the root problem, then they likely don't see the need to help. So it all falls on one person.

Keep in touch and keep talking. That should help some.
Carol

Hello Ladies,
I am so glad you are feeling better today brwthrs. Yes I agree the paperwork for the government will drive you insane. Just hang in there and something good will come out of it.
Brendalou, how is your mother doing? And most of all how are you doing?
Talk tomorrow....... I also do not hold the virtue of patience either.....

Hello All!
bwthrs, hang in there with all of the paperwork! It seems like anything involving the government takes twice as long as you expect. As my mother always tells me , "Patience is a virtue!" Unfortunately, it is a virtue that I often don't possess! You sound a lot more positive today

Hi everyone, yes I am more relaxed and it was great to have the day off. We have applied for disability and ssi and it is in the appeal stage right now so its a wait and see game. No he's not a vet. I wish he was, houston has one of the best va hospitals in the U.S., my dad goes there. They are really great to him there. I haven't exhausted all the possibilities yet. So there is still hope. I know that I will find help somewhere it just takes time and a whole lot of paper work.
Well I hope that things are going alright for everyone else. We have to keep our spirits up. God will help us all through all this. And since I found this site I know that I'm not alone.

bwthrs

I'm wondering if he is a veteran. The VA is used to veterans with alcoholism and they may be able to help. Also, the site www.veteranaid.org is a good resource.

Carol

bwthrs, I am so glad you had a day off. Doesn't fell wonderful!!! You may be back to the same routine, but with a different you are more relaxed and ready to take on the world.
I hope you find something financial soon. If he can not get Social Security what about SSI that is what it is called in my state. It is for people that do not qualify for Social Security. It is a Supplementary Income.
Take care

lisalives here! I am so glad you got a day to enjoy. Sometimes its amazing what you can do with 15 minutes.

Be happy your doing the best you can. I am so glad there is a resource like this to connect with others. I learned I sure am not alone. I learned I really don't have much to complain about think about some of the stories and years people do this.

Smile someone else might catch it!

Hello everyone, I had such a good day yesterday. My husband took care of Johnny for the day and I got to play in my swimmimg pool. Even though I was still at home with Johnny I was able to feel some relief. Today things were back to normal. I did take Johnny to some places to try to get some kind of financial help. Dememtia is a very expencive illness to have. We have applied for social securety and have been turned down twice now and we are appealing it again. I sure hope it goes through soon though.
I have decided not to worry about his kids, I'm just going to face the fact that they don't want to be a part of his life and go on with our life. It will be their lose in the end.

MysticalAngel,
You must inform the doctor to how she acting and what she is saying. She may get angry at you, but it is for her good. She may be depressed and something else may be going on. It could be her medication, in other words it could be anything. And it could be something that can be fixed easily.
Do you have a local Case Coornidation Unit or senior services and try and get a homemaker in there for a few hours a day. This will help a lot. Just to get away for a while knowing she is being taken care of.
I tried to do it by myself thinking it would not be anything. But it is very hard work. It works on your mental and emotions so much. It really can drain you very fast.
Please call the doctor and tell him about your grandmother. He may have numbers for you call to get someone in the home to help you. Homemakers can clean the homes, do grocery shopping, and take them to the doctor appointments.

MysticalAngel, you and your mother must really love your Grandmother to be dealing with all this...so please, give yourselves a break. I cared for my father for 2 years full time while working full time and managing my own problems. What I have to tell you is this...you can't and shouldn't be trying to take all this on. Caregiving has a big tendency to make our world get smaller and smaller as we focus solely on how to help someone and keep ourselves sane. The sense of isolation can be very difficult to handle. Please, call your local, city or county, Human Services office and see if someone in Senior Services can point you in the right direction to get some help and much needed rest.

As far as anyone other than your Mom and you helping - if they were going to they already would be. Trust me, you need to forget about them helping and move on to other options. Or the resentment and stress toward them will just continue to build and they will still not come through for you. Then you just add the stress of dealing with them on top of all you are already dealing with. You and your mom sit down and look at this whole situation factually as if you were helping a family with the exact same problem. What would you tell them to do? As much as you can take the emotion out of your thinking and planning. You and your mom sound like really kind people...you will make a compassionate choice that will benefit you all and allow you to have some joy back in your lives. Take care.

Today has been really hard on me... I have had a busy day planned and had to get it done with no choice. I have a cousin that owns horse's as well as me, well she has been depending on me to help her with her horse's since she just had to put one down. But in return she has been letting me use one of her trucks to get around. Well my grandmother finds something wrong with me helping her out with her horse's
I had to get 7 horse's feet trimmed and shoes on them. My grandmother didn't understand I had been out in the sun from 7:30 A.M. until about 3:45 P.M. and I was zapped by the heat I think it was upwards of like 98 or maybe even 100 today, I wanted to come in and get cool before I did anything, but no she wouldn't leave me alone, and on top of her nagging and everything I have had a headache for the past 3 days and can't get rid of it.
I told my boyfriend tonight that we are going to run away to his parents house in Montgomery for a few days just to get me away from here.

You defiantly need to talk to her doctor. My dad had a triple bypass 22years ago and we went through a similar thing, I found my dad with a gun talking about not wanting to live anylonger. It took some time but with the doctors help he was able to get throught it and he is fine and has been for some time. I do believe that something happens during the surgery to them. But you do need to talk to the doctor. She will probably get mad but she will get over it and will be glad that you did.

bwthrs

Grandma needs some help, and right away. She is obviously depressed and somewhat despondent to talk that way. Anesthetic can be very hard on older folks. It has taken it's toll on Grandma. I encourage you to get a hold of her regular Dr and get a referral to a mental health professional. PLEASE do not hesitate to do this. I think when Grandma feels better she will thank you. When someone uses the excuse that they can not help because of church that seems lame to me. God's word says "Honor your Father and Mother" Ignoring and not helping does not seem like honoring to me. take care and keep in touch Trisha, J

You and your mom can't handle this alone. Yes, your grandmother will be mad, but you need to tell her doctor. What affects the heart can affect the brain. Something happened during surgery (my dad came out of brain surgery totally demented). She may have had mini-strokes that haven't been detected. Whatever the problem, maybe if they hospitalize her, which they may, perhaps they can find the right medication for her.

Again, you can't put yourself through this. It's unfortunately all too common where the care falls on the one who will do it. And isn't it ironic that one adult child can't because she has "church"? I've heard that before, too, and it blows me away.

Anyway, you must get help with this. I doubt your grandmother is going to kill herself, but if she did you'd blame yourself. However, the fact that she is thinking the way she is indicates she needs help. You'll have to make yourself detach from her anger by knowing what you are doing is right.

Please keep in touch and let us know how you are doing.
Carol

I need a little help or someone to talk to. Me and my boyfriend plus my child have recenlty moved in with my grandmother. We haven't been here that long and feel like we are about to loose our minds.
My grandmother had open heart surgury about 4 years ago and hasn't been then same since. I am not sure what happened to her during the surgury or what but she isn't the same. She went into the hospital with only a 10% chance of surving the surgury and sailed through it like there wasn't anything to it. She only spent one day in ICU and then was put on the regular floor with other heart patients. She was only in the hospital for like 3 days with the whole deal. She was sent home with the instructions that she needed to walk and exersize as much as possible to get her strength back up. Well she didn't , she just wanted to sit around and not do anything that the doctors told her to do. Keep in mind before she had his surgury she was fine, she cut her own grass and kept her house clean. My mother came and lived with her for 4 months to try to help her get better, but she got to where she couldn't take it anymore and the doctors that she was seeing told her that if she didn't leave she would end up in the hospital on the nutt floor because she was going crazy and was told she had a major depressive disorder.
I started just staying with her at night just to make her feel a little better about being in the house alone at night. That was all find and good, but we noticed something wasn't right come to find out they gave her the wrong meds and her thyroid went crazy because of it.
My grandmother has three kids and only me and my mom do anything for her. My mom does the bath and helps cut the grass. I take care of the gro. bills and meds and some doctor appointments my mother does others. Her other doughter's do nothing , one uses the excuse she is in school full time and has 3 kids, so she doesn't have time, and the other is that she has to work to put her doughter through school and she has church. There for everything falls on me and my mom.
My grandmother got to the point to where she didn't want to go to church, or see family unless I was there. She won't go out to eat, she won't even drive. All she does is lay in the bed, or complain because I didn't do something that she wanted me to do, or sit in her recliner.
Well, tonight I was in her room sitting talking to her just to see what she might have to say. She come off the wall with some stuff that just blew my mind. Things that I never thought I would ever hear come out of her mouth. She told me " I know how to kill myself since you took all of my meds and my guns away from me." It was just an out of the blue thing just blew my mind. I was just wondering what she would say so I asked her " How?" She told me " get a 5 gallon bucked and a razor blade, cut my wrist and watch the blood run out until I was dead, how much blood is in a human body anyways?" It just flipped me out completly. I am not sure weather or not I should call her doctor's and tell them what she said or what so I called my mom. She isn't sure what to do either. Help me with this choice. I am scared that if I tell her doctor she will be mad at me, and he will lock up on the nutt floor. I am not sure how much more I can take of this kind of talk.
She has been miserable since she had the surugry!

Any advice is welcome
Trisha

Yes, you'll likely be the main caregiver for your parents, as well, but as their needs build, try to meet with your siblings in a friendly manner, and see if you can find something that each can do, even from a distance. If you do this early, it may help. Still, you are realistic enough to know that it won't be "equal." Sibling issues cropped up more than anything thing else, when I interviewed caregivers for my book.

Take care and please keep in touch.
Carol

Thank you Carol, this helps alot. I am going to check with my church and see if they have this and the Al-anon is a good thing, I have gone to them before, haven't been able to get my husband to go yet but maybe someday.
I have been very lucky with my parents. They live on their on so far and are able to on the most part take care of their selves. I do try to help them out when I can and my children help out alot with the things that my parents aren't able to do anymore. So there is alot of help there. But you are right when the time comes that they no longer are able, I will be the one to care for them. I can see that now on just the few things that I do. I have 1 sister and 2 brothers, the 1 sister and 1 brother live far away and the 1 brother that is close by never seems to have time to help, so I can already see who it will be left up to. Oh well I love my parents very much and I would do anything for them that I can.
Thank you Carol for your kind words and I will check out the n4a.org.
Brenda

Respite is just any kind of care you can get for the person you are taking care of, so you can have some time to yourself. Some churches will have people who can visit with the elder or sick person. In your case, with all of the people you are caring for, I would think that your state human services would have a program to help you. My state has money that goes to waste because people don't know that it is available, and it's designated for respite care for people just like you.

The people you are caring for won't want to have someone else, because they are used to you. But, for your own health, you need help. It's good your daughter can help some. But maybe you can get someone to sit with your brother-in-law while you go to an Al-anon meeting (or you and your husband - it would help him learn to accept his brother's condition). Use it for whatever you need, but do try to find it.

There are volunteers with the Retired Senior Volunteer Program (RSVP) that can sometimes come and sit and visit with the sick person. Faith based groups like block nurses can help. You may want to contact your local Area Agency on Aging or go to www.n4a.org, to see if they can direct you to local services. Adult social services with your county can be helpful, as well.

Please promist yourself you will try to get some help before you are the one who is sick.
Carol

Hi Carol, You are so right about how people react when you tell them that it is alchol induced. I have heard it so many times from even family members, "Well he brought it on himself" or "He made the choice to drink" but that doesn't help me. He lived away from his kids for 12 years and only contacted them buy phone so his youngest daughter doesn't know him very well. I do understand their feelings to a point but I also think about my dad and if it were him I would be right there. In fact my dad has had heart surgery and is a diabetic, is on oxygen from COPD and my mothier is just finishing up her cancer treatments. I do most of the helping with both of them also. So it is hard for me to simpathis with Johnny's kids. My husband is a big help to me but it is very hard on him. Its hard for him to even admit that this is all happening to his brother.
My daughter has offered to help once in awhile. When I was taking my mother for her cancer treatments my daughter would come over and stay with Johnny while I was gone. She is 30 years old and she is a big help to me.
It may sound silly, but what is respite? I have never heard of it. Could someone explain it to me? I guess I really do need to get out more (lol).

Brenda

Alcohol induced dementia is often even harder on the caregiver than other dementias, because realtives - and often the person with dementia - deny that it is alcohol induced. Society blames the alcoholic, and that doesn't help you!

It's often hard to tell friends why the dementia is happening and then they just say "well, he brought it on himself." Your husband likely as very mixed emotions about it all. Likely your brother-in-law's kids have a checkered past with their father, too.

So, you are the caregiver. You are the one to handle the fallout. But you need to get help. Hopefully, you husband will find a way to get some paid help to relieve you. You have to take care of yourself, and there's a limit to how much of this you can do without respite. Try to get to Al-Anon or Families Anonymous meetings. That could help you with a lot of this, and it's free (if you can just get out.)

Carol

Brenda is right Patricia, You have to take care of yourself in order to be able to take care of your Mom. Check to see if there is a respite program in your area. This can be very valuable to you and your loved one. If there is no program as such check into in home respite with the hospital home care dept. I work for our local area agency on aging, it can be a good resource also to find some help. If someone in your family wants to help, let them. If they don't offer then just tell them what you need. A statistic that always gives me pause, 60% of caregivers will predecease their loved one. I work closely with the Alzheimer's assoc. they can also be a good resource for you... take care and feel free to write back, J

Hi Patricia, I know just what you are going through. You have come to a great place here at AgingCare. I think everyone here knows just how you feel or has similar problems. Its really hard being the caregiver to Dementia patients and it is easy to get depressed but you HAVE to take care of yourself also. Maybe you and your sibblings could set a schedule as to when and how long each one would sit with your mother. Maybe each one could take a turn taking your mother to their home for a few hours or maybe a few days. Is there a senior's center in your area that you might be able to get some help there?
With my brother-in-law, I know the day is coming when I will have no choice but to put him in a nursing home and I don't want to until I just have to, but he will need more care than I can give him. Right now he cant remember to chew his food and twice I have had to take him to the hospital because he had meat lodged in his esophagus and couldn't eat or drink anything, so now I have to put all his food in a blender or give him baby food. And the guilt is very real that I feel about it because Johnny never wanted to go to a nursing home. He has 3 grown children and they don't help me out very much either and don't help me financally at all.
You have to take care of yourself though and knowing that there are other people who are going through the same thing and being able to vent my frustration on here certainly have helped me alot. I hope that it will help you. We are all here for you.
God Bless you
Brenda

Hi I'm patricia and was just looking on line for help in taking care of my who also has dementia. I am sitting here crying because I just don't know what to do anymore. My father passed away 4 years ago and it was just getting to hard for my mom to live on her own so I moved in with her a year ago. I have 7 brothers and sisters but it seems like 90% of the time it's just me taking care of her. I love her but am getting very depressed feeling like I don't have a life anymore. We have had meetings to share the care for my mother but when they do come by it's usually for a few hrs. and if i'm not back i'm the only one that they call to come home. I have thought about moving out but can't do that to my mother. If I do my family will just want to put her in a nursing home and my mother has begged me that she does not want to end up there. Sometimes I am home for 30 days straight and I don't know how much longer I can take of that

Thank you all so much, Today was a good day for Johnny. He doesn't have many so I am really happy when he does. He was very pleasant to be around and talk to. It made me realize how much I miss having him around to talk to. I know that tomorrow he will be back to what has come to be "normal" but today was nice. It is good to have people to talk to that understand what living with someone with dementia is like. I wish that Johnny could have more good days. When he first came to live with us he would have 4 good days and 1 bad day but in the last couple of months it has turned around and become 4 bad days and sometimes 1 good day. I haven't heard from his kids this week so I guess they won't come to see him again this weekend either. I tried to explain to them that they need to spend as much time as they can with him while he still knows who they are because the time is coming when he won't know them. I wish they would come around more often, it would make it alot easier on them later and me now. Oh well I will have a clear conscience.
Yes it sure does help to be able to vent, and again thank you all for listening.
Brenda

Stay in touch. Validating feelings is a good part of what groups like this are about. You will have ever changing emotions, and the advice to remember it is the disease, not the person is solid. It's hard to do, but right on the mark. Keep in touch and vent your feelings. It helps.
Carol

bwthrs, please do understand it is the disease not the man speaking. It is very hard to look past the words and keep you head up. Have you read the article on this site called something the Long Good-bye. It is very good. It validated every emotion I had.
Do get some time for yourself. I know from experience that is very hard to do at times. As I said in a post the other day. I finally got to take a nap I had forgot what it felt like, it was very nice. So if you can steal a few minutes away please do.

Caregiving is a tough job, NO doubt about it... I admire you for caring for your brother in law...I have a brother in law I love dearly and I would do the same thing for him. Try to find a support group for caregivers in your area and go... Even if you only take the time to have a bubble bath, or read a book take some time for yourself... take care and God Bless you ... J

Just me Lisalives checking in. I just finished my profile. I think! Sounds like you are getting the support you asked for. Just wanted you to know you are in my thoughts.

After visiting this site and reading about what other people go through, I am feeling like I am very lucky and have very little to complain about. When I am in the midst of everything it is hard to see that.

God Bless you all, lisalives

Brenda
Hard as it is for your brotherin lay to treat you badly, you have to remeber that it is the dementia and not really him! I still say stay on his kids. They have a responsibility to help. I so agree that finding this site is a blessing. Knowing that I am not the only one struggling through this helps so much. I used to stand outside and cry at night feeling totally isolated. Now I am on the computer meeting new people in my same situation and feeling so much a part of a group that cares and supports each other. Thank you all so much!! God Bless!
Brendalou