How are you FEELING?

Well,  I don't have any urgent crisis now.  THANK GOD!, but I am coming up on the one year anniversary next week of mom passing away.  Not sure how that will be.   But today is a good day.

I hear you on the anniversary. *nods* But in my experience, every year it hurts a little less, but it never goes totally away. Sometimes it's hard to believe how much time has gone by, and there are times still when I want to just YELL at him for not being here to see his grandson play ball or his granddaughters dance and play piano - all those little things that make up who they are.

I am the mother and has metastic cancer.  I brought a rancher to downside, not seeing all the trees, leaves and maintance.  I loved the whole property. 

Our decision now is to find a multifamily home for me, older mate, and daughter, husband and 4 children.  There I need to sell my house.  Which I flipfloped about, since a lot of stress involved in the process.

  But to degress, I hope things with the family will get  better and   being around the children, keep me strong!

Hi Gee! I hope things will get better for you, too!

It sure is hard some times to make progress when feeling lots of stress.  When I remember I do some exercise or tai chi to clear the mind.  Good luck with house finding Gee.

I am new here.  Just looking to share some feelings.  I hope maybe someone has some ideas.  I am taking care of my Mother in Law.  There are some very trying times and many wonderful times.  I feel that I am coming closer to the end.  Looking for some good advice of where to go to find some more information.  When my father was diagnosed with cancer there are many chat rooms and such to always talk.  with dealing with dimentia there are not as many places to go.  Some days I feel that I don't know how much longer I can do this.  Any advice would be appreciated.

hey welcome ess1058.  I've found great info on this site.  Both the articles and the blog posts.  Dementia is really hard.  I guess I'm fortunate not to have to face that directly yet, though having my best friend's mom yell at her, and be bitter, and not know her was pretty tough.  when I was taking care of my mom in the hospital there was one day I just thought I had to give up.  I couldn't possible do another thing I was so beat.  So I gave up.  And I'm not really sure what it was that I gave up, because next thing you know, Mom needs a pillow, and up I get and get her the pillow.  Something inside quit  - but I was still able to keep on.  I don't know if that makes any sense at all.  Anyway hey there.

I've sometimes spoke to a social worker at a nearby hospital. Just called the hospital out of the blue and asked for the social worker. Usually, they are so responsive. Plus, they have such a wealth of knowledge about community resources. The same is true of our county's homecare nurses or those responsible for elder issues.

Times can be really hard sometimes, but just know there are people out there, just a phone call away, who are willing to help. Just listening is so reassuring.

I am new here.  My father is batteling Stage IV lung cancer.  He was diagonsed in Oct.  My mom is his primary caregiver.  We just moved my family and my parents into a house so we could help them financially and help my mom, but I don't feel like I have been much help since my husband and I work all day and have to take care of our 2 small kids (ages 4 and 2 1/2) at night.  I have tried to find support groups in our area, but can't find anything.  Thought I would try to find some advice on how to help my mom deal with her struggles and depression.  My parents are relatively young (56) and I am only 29...Any advice you all can give I would be very greatful for.  I am very scared and worried about what to do and I feel so alone.  My friends & other family are all in a different state...so we are in this by ourselves.  I called my father's Dr's office yesterday for some advice on where we could go and they just told me to go look up stuff on the internet...frustrating...

Hello, Danelle,

Well, I'm sure glad you found us! ;) I'm sorry your father's doctor's office wasn't more helpful. You'd think they'd have contact information for support groups and such.

Not to defend that doctor's office staff, but, nowadays, most doctors' offices are staffed by high school grads with a few months training, called medical assistants. They are not nurses, nor are they trained even like a nurses' assistant (AKA, nurses' aide).

Consider calling American Cancer Society. They often have people that can talk to you, or that are more networked with others in the field. They may even sponsor support groups in your area.

Another great resource is the registered nurse who is administering any chemotherapy, or the radiation technologist who sets up the initial radiation markings, etc. These people should be able to direct you to some other 'expert' who can help you find support groups, education, etc. Often, a social worker is assigned to 'cover' the department, and, again, they should be able to help you.

Don't be afraid to ask, "What would you do if you were in my situation?" I've gotten some tremendous ideas when I picked the brain of someone else. Networking really helps in this area of life, just like in getting jobs.

And if you know any nurse, especially those with a master's degree or doctorate, call them. They have the ability to get to the source of your problem and point you in the direction of help, often with only a few minutes discussion. (And, remember, they WANT to help!)

Danelle,  I totally understand what you are going through.  My father passed away from colon cancer.  I do agree with the advice to look on the american cancer society.  there are so many wonderful places that they will direct you also. There is a group that will give you all kinds of info.  It is somewhat listserv..something.  I do not find it right off the top of my head.  There are differant groups for differant types of cancer.  My father had a diagnosis of 3-6 months to live.  We were able to enjoy him for 5 years after that.  I still to this day contribute some of it to being able to research differant things for him.  We also did sign up and get onboard with some experimental treatment.  There are so many wonderful things and people you can find out there to help you.  My parents were of the mind set that you don't question your doctor.  That is the one thing that I was able to convice them was if you are not satisfied with him it is okay to look elsewhere.  I definitely would look at some of the sites on ACS.  Good luck in your search.

Rebecca,

Thank you for the response.  We have been taking care of her for such a long time.  It is just so hard to watch now.  She had some seizures last week and it has left her pretty much a vegetable.  She can no longer speak.  We do feed her.  We have had to go to a pureed diet.  She is getting so stiff that scares me also.  I am so glad I am able to take care of her, I see the decline everyday.  I am the type of person who likes to be as informed as possible.  I am just trying to find any info.  I will continue to be by her side until the end.  I do feel I am looking at about a week at the most.  I see things everyday that change.  I really don't know what I am looking for just almost someone to vent to and no that they understand what I am saying.  I must say she is very lucky that all of her boys want to keep her home and will do anything to make that happen.  Obviously she was a good mother if they are willing to do so much for her.  Thanks all for listening.

ess1058 -  It sounds like you are taking care of her at home.  That's really great that  you are able to do that.   I  would have liked to do that with my mom.  My best friend took care of her mom at home and had hospice come in for the last few weeks.  They were so supportive and caring - they were great.  For her mom, if felt like she was just struggling so much about being in the world, but then also not able to let go.  Someone had suggested to me one time that it can be important to give permission for the person to go.   So for my friend's mom, we had a long conversation with her -not that she responded  but just saying all the things that we wanted to say and saying it was okay to go now. (And she did within a day or so...)   And its curious to me how on some level we know that time is getting short - I don't really understand it, but it is clear somehow.  Its great your family are all together with this process. 

Hello,

At this very moment, I am so sad.  My Mother is in the Hospital and she is not doing well.  I moved her with me the 1st week of March and she fell and broke her back coming from the bathroom.  I was devasted.  I'm still devasted.  She has not been the same.  She's been in 3 different nursing homes and this is her 5th trip to the Hospital.  My Mother was a strong woman.  She is 86 (march 14)  I'm just all messed up inside.  I took off work for 2 months. (family leave) and just went back Monday and they call me at work to get to the Hospital.  She was uncouncious.  She is awake now but she has stop eating and won't talk anymore.  She started that about a week ago.  I did everything I could and still am for my mother.  I try to talk to her she dosen't respond.  She just stares and holds my hand real tight.  She won't talk to tell me how she feels or anything.  I'm sick inside.  I broke down at work today full of sadness.  I did not go and see her today because I can't stand to see her like she is.  It's horrible!  I'm the only girl, so it makes it that much harder.  She's always depended on me.  And I was always there.  I'm so heartbroken and I don't know how to handle this situation.  I have been asking God to Guide me in my steps.  This is the hardest thing I've ever had to go through.  I've looking up sites trying to get some answers.  But's I realize their aren't any answers but God.
 

Hello, Full of grief. I'm so sorry about your mother; it must be so difficult for you both. Please know that we are thinking of you and your mom, and to please use us when you need that shoulder to lean on. Please do let us know how things are going.

~Laura

Hey there 'full of greif'!  You are in such a hard place right now, as is your mom.  But you must face the truth. What is the truth of this moment?  If you really look inside for a moment, letting go of guilt about the fall, and see what your mom is saying in her heart I think the message will be really clear.  My guess is that she is ready to move on to a better place. But you will have to see if that is true. You could ask her. Speaking the truth and talking to your mom directly is really helpful for both of you. 

When my mom was really sick last year, I was kinda slow on some level to really understand that she couldn't bear to suffer anymore and was ready to pass on.  At some point I was able to say to her that it was okay for her to go, that I would miss her terribly.

Even if there are no words, your hearts can speak together.  Just sit with it all if you can.  lots of big heart your way!

Hi Full of  grief,  Just checking in with you.  Wondered if I'd come on too strong?  How's it going?

Hello all here..I am just beginning to become more involved with caregiving for my Mom and Dad..I do have other family help but I just wanted to introduce myself and share...I will try to  keep up with this board ..I do know that we are all a lot stronger than we think we are....Trust in yourself and you will do the right thing..I look forward to talking with you and supporting each other as we continue to care for our loved ones..Kindest Wishes-JohnB

Hello JohnB, and welcome! So glad you're found us. You're right - trust in yourself is important. We're glad to have you here to help share your experiences and offer a shoulder!

Dear Full of Grief,

I am so sorry for you and your mother. You are carrying a tremendous burden on your shoulders.  Sometimes it helps to try to think of things from a slightly different perspective. For instance, back in March, had your mother stayed at home and still fallen there. What would have happened then? By virtue of being at your home, you were able to find her. That is why God had you bring her with you. Remember that God is guiding us in ALL our decisions. Thank God you WERE able to find her and get help promptly. Despite all the resulting pain and suffering since then, you have had more time together, if nothing else.

How are you and your mother doing now? I sincerely hope she is in a better place by now. I recently had another health scare with my own mother. The fear of her gradually losing more of her mind and abilitye to function independently grieves me. As well, seeing such a strong and able woman gradually becoming less and less like herself saddens me and my father and family. It only makes her eventual death feel that much closer, despite her living with my dad at home. It's just hard to watch someone slowly (or maybe, quickly, as in your case) deteriorate into someone you know they would never want to become. Thankfully, I know that God guides us to do what he wants for her.

One thing I find hard to deal with, is that with today's medical technology I wonder when enough is enough. Am I putting my mom through unnecessary suffering by getting her through one more infection or one more illness? Is this just buying us more time, not her? She seems to rally and make it through one more time. But she is not herself during these times, since she gets confused and has lapses of memory of most of the period of days or even weeks. We have had the hard end-of-life discussions, but this type of stuff may or may not apply to those decisions. It's just the gradual chipping away of who I know my mother to be -- that's the doubt. And one brother and I live close by, while the other multitude of siblings live far away. So I fear we will decide something, along with our father, that may eventually result in disagreement among my siblings and long term anger about my mother. Fortunately, again, I look to God for guidance and relief that he is guiding our decisions for the best for our mother's. I was told so many years ago that "guilt is a wasted emotion," and I use that to relieve my own heart. It helps to talk, and to write in places even as anonymously as this.

Laural--Thank you for your reply..I hope to be able to offer support and words of encouragement to all the caregivers here. I have read your  stories and am moved by all your strength and courage to do the right thing and make the correct choices.  Please know that I have strong feelings of support for your day to day hardships and am here to talk  and share my words if needed. Kindest Wishes JohnB

Hi JohnB,   Just wanted to add my welcome too! Lost my mom last year, and now trying to manage the trials and tribulations of dad and driving, and stubbornness and all that.  cheers

Rebecca, Thanks so much for  your reply-I try to take all of this one step at a time-Can be a bit overwhelming ..would love to keep communicating on this chat board. Lets keep talking -Always feel better sharing with people-Best-JB