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robertsqueen · Mar 22, 2007, 12:47 PM

I was just worried that I was losing my mind. It seemed so real and I couldn't stop her from fading. I couldn't sleep after that. Is this a sign that something is going to happen to her? I am just so tired... I never sleep anymore and when I do I have nightmares.

RubyPitbull · Mar 22, 2007, 12:57 PM

Unfortunately, the not sleeping and nightmares are a big part of the process when you are an emotional person. I had the same problem. Some people interpret their dreams as premonitions. I personally do not. I attribute it to our subconscious, as I explained above. I believe your rational mind is telling you that you realize, subconsciously, that she is dying (fading away). I am so sorry that you are struggling so much with this. It is never easy. Frankly, to me, death, dying, life- threatening illnesses, are the worst things for us to go through and cope with in life. Did you get a chance to take a look at any of the books I suggested? You might want to start with the last one.

grammadidi · Mar 22, 2007, 05:53 PM

Your dreams are a means of releasing your emotions and thoughts that you are holding in, and yes it is very normal. Remember, right now you have hundreds of thoughts, questions, ideas, etc running through your head. The emotions and stress of your day to day life right now have to go somewhere! You will find that if you are able to release your emotions while awake, your dreams will be more 'normal'. I think you need to talk to as many people about the whole thing and your own emotions as much as possible. Is there ANY way you can see a counselor? I still would consider calling the hospice and explaing the situation and asking if there is anyone who can offer YOU support! It's OK to need it, hun... it really is! Meanwhile, keep venting here, try to enjoy some normalcy with your husband and son, go for a walk, put as much of yourself as you can into your schoolwork without overdoing it, and talk to EVERYONE and ANYONE who will listen. Is there a guidance counsellor or someone that you can talk to at school even?

Warm hugs,
Didi

robertsqueen · Mar 22, 2007, 07:27 PM

I am talking to a counslor through the college. She really helps but I still can't seem to get out of this funk. Tonight my son had a diarahea diaper at the restaurant... and it was everywhere and I got so mad... and cried. I don't know why I burst out like that, I normally wouldn't care. I just feel so empty and alone. You guys are great and I love that you guys are helping me through this. I am just so tired... I sleep maybe five hours a week. I haven't seen my aunt except in passing... like tonight at the restaurant.
My aunt tries to interact with my son... and it hurts so much because he doesn't want to go near her now... becuase she wears a wig. And I am crying now... AND I HATE IT... My heart is breaking so bad... it feels like someone is putting a knife through it... why her? What did she do to deserve all this pain. She can't even more her arm now because of the tumor. Why not the bad people in the world? I am so sick of life! Its not fair.

grammadidi · Mar 22, 2007, 10:54 PM

Well, sweetie, if you are only sleeping 5 hours a week no wonder you are such a mess! If you remember, right at the beginning of all this we all said you need to look after YOU first! You are no good to anyone if you run yourself down. Why don't you get yourself to your family doctor and ask to be put on a VERY mild dose of anti-depressant? If you take it just before you go to bed it will serve two purposes. It will help you sleep and lift you a bit. I know exactly what you are saying... I really do. I just recently went through the anniversary of my husband's death and the knife in my heart feeling came back real strong.

She didn't do anything to deserve pain. You are right, it's not fair. I know it is hard, but try to take something away from this to make your life better. Realize that what is important is not dying, but LIVING. Make the most of your life while you can. Try to focus on positive things, not the negative. This might sound harsh, but you must count your blessings at times like this. I'm not saying forget that your aunt is sick, but don't stop living yourself!

As far as your son goes, if he doesn't want to go near your aunt, that's fine. Don't force the issue. He might be reacting more to everyone's pain that to the changes in her, or he may just not recognize her. To help her feel better about it when it happens you can just say that he missed his nap so he's cranky today if you feel a need to make her feel better about it, but if he continues to struggle with it then don't include him in the visits anymore. Leave him with the pleasant memories, not frightening ones.

Please call a local hospice and talk to them about what you are going through and make an appointment with your family doctor. Tell the nurse/receptionist that it is a mental health appointment and they will book extra time with him/her.

Try to sleep. You really need it.

Remember, you have a lot of people trying to hold you up.

Warm Hugs, Didi

robertsqueen · Mar 23, 2007, 09:21 AM

I really don't have a doctor... and no insurance. Ialso don't have much money right now. I wish that I could go to the doctor but I don't have the finances. I took today off school to catch up on sleep and life. Does hospice cost anything?

robertsqueen · Mar 23, 2007, 09:25 AM

Today is a better day though... I don''t think that I am going over there... my son is really cranky and clingy and I think that he needs mommy time. Is this selfish?

RubyPitbull · Mar 23, 2007, 12:23 PM

No RQ, it is not selfish. You have a son that needs some mommy time. He should always be your main focus. Although your Aunt is important, your son is more important. He needs your attention more than anyone else.

Hospice does not cost anything. I don't know what kind of insurance your Aunt has but hospice is covered by all insurers. If she doesn't have insurance, is she on Medicare? That covers it too.

I can't remember which hospital you told us that your Aunt is getting treatment at, but you might want to call them and ask to speak with the Patient Advocate office. If they don't have anyone, which I highly doubt, ask to speak with someone in the administrative offices. They will be able to direct you to the person who can answer your questions.

In the meantime, please take a look at this site.

https://www.hospicefoundation.org/

robertsqueen · Mar 24, 2007, 07:02 PM

Thank you so much Ruby... the website really helped me clear up stuff. I have another question for you two. Last night my aunt had people over at her house for dinner... and she kept on falling. She fell once and hit her head on the coffee table.. and then she fell again by the counter. Is this normal? I wanted to have her seen at the hospital but everyone insists that it is her medication. I am confused. Also she barely eats anything.. and says that everything tastes bland to her... is there something that I can get her for a treat that won't taste bland?

RubyPitbull · Mar 24, 2007, 07:20 PM

I am glad the web site helped.

Honey, it could be the medications or it could be the cancer in the brain that is causing her to fall. If she has area rugs, it would be wise to convince your aunt, or mother, or grandmother, to roll them up and put them away somewhere. I had to do that with my husband because his exhaustion made him drag his feet and he kept tripping.

Regarding the food, a lot of cancer patients claim what your aunt is claiming. Others claim that most foods have a terrible taste to them. My husband claimed meat tasted like what he imagined burnt rubber tasted like. This is caused by the chemo. It is explained and outlined in one of the books I suggested earlier. I know for my husband, the only thing he could taste was sweet. When he had trouble swallowing, I bought him Hagen Daz ice cream and that really rich baby yogurt (Yo Baby?). I tried to get as many calories into him as possible. You may also want to pick up some of those Ensure drinks. They have the vitamins and minerals she needs. They come in different flavors. Pick the ones she likes the most.

Hopefully Didi will stop by with some other suggestions.

robertsqueen · Mar 24, 2007, 07:23 PM

It just worries me because her husband... my uncle.. we think is taking her pain medication so he is no condition to watch after her.. and what if she falls and seriously hurts herself?

RubyPitbull · Mar 24, 2007, 07:33 PM

She may very well be at a point where hospice needs to be called in. They send an aide that will be there 24/7 and help the patient with everything. If your Uncle is that irresponsible, the aide will also be the person monitoring the drugs. Your Aunt would be well served to have them at her home. They are really very nice people and a wonderful help to both the patient and the caregiver. If you are worried she will hurt herself and no one else is doing anything, as I stated earlier in one of my you need to start asserting yourself with the older folks.

robertsqueen · Mar 25, 2007, 07:14 PM

I am trying to... but they said no to hospice... they think she is doing fine.

RubyPitbull · Mar 26, 2007, 06:06 AM

Well, RQ if you cannot convince the others to listen to you, there is not much more you can do, outside of calling the cancer treatment center she is going to and speaking with someone familiar with her case. But, I doubt they will just get on the phone and speak with you. They usually only speak with the people directly involved with the treatment.

You can suggest they pull up the rugs and make sure any sharp objects or tables be moved out of her path if she is having trouble navigating around her home. If the rest of your family thinks they have it under control you have to hope and pray she doesn't get hurt and that they will call in hospice when they feel it is time. Who knows? Maybe she is fighting them on calling hospice in and doesn't think she needs it yet. If she is refusing, they are probably afraid of upsetting her. Have you spoken directly to her about it? Go to the website I gave you and print out info that you think she will respond to. The best way to find out who is really in control is to go directly to your Aunt. Talk to her about your concerns. If she is comfortable with how everyone around her is taking care of her, you need to let it go and leave it to the others. The main objective in all of this is that she is pain free. That is all anyone can hope for in this situation. And, she will know how much you love her by doing this. Don't upset her. If she brushes it all off and doesn't want to talk about it or doesn't feel she needs it, don't push it.

Just keep being as supportive as you can to her and make sure that you don't neglect yourself and your own little family while this is going on.

robertsqueen · Mar 26, 2007, 07:52 AM

I did print off some information on the website..and I am going to go over it with her when no one else is around. I went over to her house to move things around so that she will be more comfortable. She goes back to Denver today to get more chemo treatment. I just wish that she was better. I hate to see her like this..so weak and scared. When she does try to talk about it..no one will let her. She sleeps alot..is this normal also? Or is she depressed? Thank you again for your valuable imput and for taking time to help me go through this. I don't know where I woudl be without you and Didi.

RubyPitbull · Mar 26, 2007, 08:37 AM

Sleeping a lot is part of this whole thing. The drugs she is on do a number on the system. If they have her on pain meds, that contributes to the excessive sleeping too.

Well, it sounds like you are doing what you can. When you are alone with her, if she wants to talk about it, let her. If she doesn't, don't push it. If nothing else, at least you will know that you have tried to do everything you can do for her. And, I am sure she appreciates everything you are doing.

grammadidi · Mar 26, 2007, 07:10 PM

Hi RQ, Sorry, sometimes I have to back off a bit... lots of personal memories and pain. Anyhow, I was catching up and have a few questions. Who is your aunt with most of the time? Who is her primary caregiver? What role do each of the other family members all play?

From what I've read, Ruby seems to have given you great advice/suggestions. I guess there comes a point in time where you have to realize that the only thing you CAN control is you and your role in life. As painful as it may be, you can't tell your aunt's mom and sister that you, as a niece, should be listened to. All you can do is express your opinions gently and put some trust in God.

The falling, tiredness, etc. is probably a combination of the illness and the pain killers. Everything out of the ordinary will be rooted in those causes now. I think that you need to prepare yourself for what lies ahead and spend as much time as possible in ensuring that you and your own life is in order. Your son, husband, mother, grandmother, uncle... they will probably need you after all is said and done.

When my husband was dying some people did not agree with the way we decided to deal with the end of his life. All that really mattered to me was him - right or wrong, that was the choice that we made. I did get volunteers in to spend 'silly' time with my daughter so she could have as normal a life as possible. I know that my family were all dealing with the events of our lives in different ways. I just accepted their feelings, acknowledged their beliefs and did things the way we had decided. Everyone is going to do and say what they feel is best, but ultimately, unless you are the primary caregiver you just cannot interfere.

You might suggest a wheelchair or sturdy walker for your aunt - to her, maybe. I wish they would allow the hospice to become involved. Perhaps you can find out more about hospice and community care resources and pass the info on to your mom. They may not understand what is available. Regardless, though, the primary caregiver will make all the decisions and constantly butting heads with them is not helpful either.

Pour whatever energies you have into you, your husband and son. If there is more left, give it to your studies, then offer support to the family. Remember the adage 'Too many cooks spoil the broth.'? It will apply here as well. No matter what happens it will always be easy to find fault. Try focusing on the positives.

Hang in there... you actually are sounding stronger, so I think that expressing yourself, asking questions, reading information and focusing on your own little family and you is definitely the way to go.

Hugs, Didi

robertsqueen · Mar 26, 2007, 08:20 PM

[I am sorry that I am causing you pain again.
the primary caregivers are my grandma, mom, and my uncle,.
I agree but they aren't accepting shes sick and are pressuing her to be the old Tammy...I don't think thats right.

I have so much homework right now its not even funny...and my son is sick so I have been taking care of him, but its late at night that the ache comes back.

I am getting stronger becuase you and Ruby are helping me understand what I dont understand.I can't tell you how much it means that you are there for me....and to be there for me even though you are hurting again....You two are like angels that are here whenI need you the most.

grammadidi · Mar 27, 2007, 11:41 AM

Just wanted to say that YOU are not causing me pain. Sometimes 'talking' and thinking about the past brings up painful memories as well as good ones. That's okay... if I feel pain then it means I am alive. The painful memories were things caused by other people - for instance giving my husband a recalled pain pump that malfunctioned and cause him to be without ANY pain meds for 24 hours only 12 hours before his death.

In addition, I am presently battling with vaginal cancer and some ovarian issues, so sometimes that causes me pain. Helping you (and others) is something positive for me. I just have a need to back off every now and again because I won't let myself be overwhelmed. My husband's illness taught me that I have to be a little more selfish from time to time.

I understand exactly how you feel with regards to them trying to pressure her to be the 'old' Tammy. Just please realize that while it may be a bit difficult on her physically, it might be helping her emotionally. It might fill her with hope, and hope can go a long way in healing. I just want you to expend more energy into ensuring that you are emotionally and physically healthy. This will help you more in the long run than all the worry and stress you are putting on yourself.

I am glad that Ruby and I are helping. Continue to concentrate on your homework and son. Set your priorities: 1. you; 2. son/husband; 3. schoolwork; THEN prioritize your other issues. Sweetie, you were strong right from the get-go. You just lost it in your pain and we are trying to keep it all in focus for you. Remember to carry Tammy's legacy for the rest of your life - her strength, her humour - all the things you love about her. Learn from it and teach your son those same values. If you don't look after yourself now, what will happen when Tammy does pass on? You must get your life in as much order as you can now.

Warm, tight hugs,
Didi

robertsqueen · Apr 3, 2007, 06:33 PM

Hello again. How are you guys doing? I am not doing that great today. Today has been a hard day. My aunt is crying non stop and I feel so helpless. What can I do to cheer her up?