Topic: Sensitive: End stage

Today has been the worst day yet.  Dad woke at 12ish and wanted a drink, we gave him a sports  bottle to drink out of as he keeps spilling his drinks due to extreme weakness,but  he still spilt this which sent him into a rage.  He is too weak to walk so me and Mom had to guide him to a chair so Mom could change the bed.  All the time he was crying and saying sorry and how useless he is.  I tried to calm him down and eventually he settled until it was time to change his pjs.  He is very proud and does not want any help but he is so weak it is not physically possible for him to do any thing.  He has a stoma bag which he takes care of himself, there is no way he is going to be able to do this but he is insisting he can.  We are worried he is going to fall if he attempts it and then he could end up in hospital.  I said Mom was worried about him falling and that the Nurse could help, he went mad, and i mean mad.  He said he would have no dignity left then he started to cry.  It has broke my heart.  I am worried about Mom coping with him, I want to call in macmillan nurses now (they are due fri, dad wasn't seen as urgent on Monday, and to be fair he could manage it 2 days ago) but Dad has made me promise I won't call anyone in do to it for him.  I'm scared if I phone he will never forgive me.
Dad is so stubborn but he as never been an angry person.  I know this isn't my Dad and it's the cc and medication but I don't want to remember him like this, he was always the one with the cheeky smile and shining eyes.
Mom is worried if he needs the toilet to wee how he will get there, I offered to get him a special container to do it in and again he went mad, got aggitated and cried.  I just don't know what to do. I wish God would take him now,enough is enough, this is too cruel, he deserves to be at peace.  The only good thing is so far he is not in any pain.

Devoted Daughter to the most wonderful Dad a girl could ask for.  Sadly lost his battle on 19.02.11, peacefully in the arms of Mom and I.  As requested by Dad "we will keep on smiling".

Re: Sensitive: End stage

Andie,

You've already said it.....this is the medication and the disease talking...NOT YOUR DAD!

I would hazard a guess that his ammonia levels may be high and this can affect mental changes. 

My advice to you would be...go ahead and make the call without your Dad knowing and get their feedback on the situation.  They will have advice on how best to handle things.  If your Dad falls and breaks a hip he will be in worse shape.  Do this for you and your Mom's sake.  If your Dad was in his right mind it wouldn't even be a consideration for him...he would tell you to do what's best for you and your Mom.

This is the part of the disease I hate the most....when it steals the personality and demeanor of those we love best. 

I'm sending prayers for strength and hugs and love....

Pam

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: Sensitive: End stage

I'm so sorry Andrea... I wish there was someway I could help you through this, something I could say to make it easier.  I can't imagine how hard it must be to see him this way, but you are right... this is NOT your Dad.  I would have to agree with Pam - make the call, even if it's just for some advice. 

Know that there are people across the world praying for you and keeping you close in their hearts... I pray for peace for you all.

Jen

Re: Sensitive: End stage

Andie....as mentioned by me earlier my husband also did not want to be tended to by anyone but myself.  However, this is the time for outside help to be present, as things will progress and the ensuing situation is well beyond the reach of ordinary care you are able to provide.  As Pam has mentioned please, make that call.  Your Dad's comfort is at stake.
All my love,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Sensitive: End stage

Andie, my heart breaks for your dad, mom, and you.  I was where you are at in November.  The risk of your dad falling is a huge concern.  My dad became so weak he would spill things too.  He had bathroom issues too.  He used a urinal in the bedroom, but became so weak we had to stand him up.  We gave him as much dignity as we could.  My dad became angry several times in the end too.  It would be something easy like his radio wouldn't work right.  He also didn't want extra help in the house. We called the social worker to have a chat with him.  He knew he was losing what little he had left.  He said at one point he was afraid helpers would say he wasn't trustworthy.  He would
apologize when he got mad.  We just loved and hugged him.  Does your dad take medication for anixety?  It sounds like you do a good job calming him
down,but your mom and you need help.  I am thinking of you in these upcoming days.  God will give you the strength for a peaceful ending.

Re: Sensitive: End stage

Andie, I would either call the Nurse and ask advise or have her stop and she can tell your dad she was worried about him and was nearby so stopped in.
I know when Teddy couldn't get up that last day at home I could not even get him to the portable commode. The Nurse had a talk with him and I took him to the Hospice Facility. The Home Nurses had given me some pads to put under him in case of accidents and also some diapers, which fortunately I didn't have to use.  Teddy listened to me and I was grateful for that. I know this is not your dad, not him at all but isn't there a medication they can order to calm him down even if it is from the meds? The Hospice Nurse explained to Teddy that even a small fall would be very bad and add to his pain. I am just so sorry that you are all experiencing this. Andie, could some of this be fright of what is to come? If you think so, perhaps a clergy could come talk to him. Everyone, you know is different, just trying to come up with suggestions. You are the one who really knows best.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Sensitive: End stage

Andie,

I am so sorry that you are going through this and I can so relate to what it is like for you right now. I wish there was something that I could say that would help. But I do agree with what the others have said about getting in some outside help as this will be of help not just for your dad but for you and your mum as well.

Thinking of you right now and hoping for peace.

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Sensitive: End stage

Dear Andrea

I can only agree with everyone else's comments, and with Lainy's comment re medication to calm him down.  I think when someone is as ill as your Dad is, then the brain fires off all sorts of signals that lead to the sort of behaviour that you just don't recognise as being them. 

This is all just so hard ... 

Love and prayers coming your way.

Helen xx

Re: Sensitive: End stage

Dear Andie - I am so sorry that you are going through this. We also experienced this and my "stubborn" beloved last act was to fight me on wanting to go to the restroom and not even try a bedside commode, let alone a urinal. I almost laughed but it was to sad. He kept telling me to get out of the way and I wasn't in the way. I knew it wasn't him and yet I appreciated that he maintained that personal sense of strength until the very end. I never thought he would allow a nurse to bathe him, but he did. I thought he would be furious with me, but it happened one time and he did very well. My thoughts and prayers are with you. Remember, he is not himself and the meds and changes in his body influence all that he says and does. I wish I had some wonderful words for you, but all I can say is my heart is with you. Blessings, Susan

Re: Sensitive: End stage

Andie

I agree with everyone, you should make the call, my dad became so weak at the end, he could not even speak coherently, it really helped to have hospice advising us and reassuring us as the end drew near.

My dad also hated the incapacity of his end stage disease - I am thinking of you constantly, Andie, I wish I could offer you more support, but know that you are in my prayers, i Pray for a peaceful passing for your Dad.

Lots of love

Mich

"My dad, Tony, passed away on 4 October 2010, after a 19 month battle with CC"   - I carry you in my heart, Dad, forever.

Re: Sensitive: End stage

Andie, there are some anti-anxiety drugs being given to older people that actually cause agitation, Ativan being one of them. It may be one of the drugs your dad is receiving.  I feel so badly for you knowing how difficult it is to watch a formerly loving father change so drastically. Pain all by itself and so many medications can do this to a person. My prayers are with you and your mother as you try to give the best care you can. Charlotte

Re: Sensitive: End stage

Well we called the Macmillan team in yesterday and I must admit it overwhelmed us, it was literally like a SWAT team arriving.  Within the hour we had Macmillan nurses, carers, district nurses and then equipment arriving.  This really upset Dad and I must admit I didn't like the Macmillan Nurse when she spoke to Dad.  She told him he was a dying man with very limited time, 2 to 3 days at most so his wife needed help!  Well that only put Moms back up. We have declined carers, if Dad as only days and he doesn't want strangers washing him then Mom and I will do it. He calmed down once we promised him this and has been calm since. We have accepted the urinal and the District nurses have the syringe driver and drugs ready but don't feel they are necessary at the moment. They will check him twice a day and then every 6 hours once they are giving him drugs.  They are angels and have been so lovely with him. He is still saying thank you to them!  He is still in no pain at all.  He keeps drifting in and out of sleep.  When awake the room is so so cold, it also hits you halfway up the stairs, he goes between telling us he loves us to saying not ready yet.  Mom said he was talking all night to passed family.  I am just on my way up there now once I have taken my son to school.

Please pray he continues to be pain free and can pass peacefully at home.  I believe all your prayers and support are travelling to us and helping.

Best wishes to all my cc family

Andrea x

Devoted Daughter to the most wonderful Dad a girl could ask for.  Sadly lost his battle on 19.02.11, peacefully in the arms of Mom and I.  As requested by Dad "we will keep on smiling".

Re: Sensitive: End stage

Dearest Andie....is there a sensitivity button one can push?  This is such a delicate situation and the least one would expect is for someone to upset your Dad and your family.  By tending to your Dad's hygiene you are eliminating some close physical contact with strangers something so very important to him.  You are making all the right decisions, Andie.  This time simultaneously is precious and bittersweet.  May peace surround you and your family.
A tidal wave of love is coming your way.
Hugs
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Sensitive: End stage

Andie,

You are doing everything as it's supposed to be.  Your overriding concerns are what's best for your Dad and Mom.  Your head is on "straight" and you are a wonderful caring daughter.

These next days will be difficult but you can face them knowing you are and have done everything possible to help your Dad on his journey. 

I believe the fact that he is comfortable and drifting in and out of sleep is an answer to all the prayers I know are surrounding you and your family.  I pray his passage will be an easy one.

I know from reading your posts your Dad will be leaving a remarkable legacy.  He has truly done his job well ....you are a testiment to that.

Please treasure every moment of the coming days.  I'm sending prayers, hugs and love.

We are with you.

Pam

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: Sensitive: End stage

Andie - My son's biggest fear was being able to maintain his dignity when the end was near.  Thankfully, he did.  He was not able to urinate in the last days so "bathroom issues" never became a problem.  Perhaps the same will happen with your Dad......I wish you all peace and strength. - Nancy

Mother of John who lost his battle on Oct. 9, 2009 at age 30....

Re: Sensitive: End stage

Dear Andie, You and your Mom are beautiful and strong and I would certainly want you by my side! I agree the one Nurse didn't have to be that brutal. Your dad is not stupid and he knows darn well what is happening and I think the whole team that arrived had a calming effect on him and everything will hopefully be smooth now. Robin and I found the talking to people from beyond was quite somthing else no words for it. Teddy would reach out his arms, encircle them as if hugging someone and even went so far as to purse his lips in to a kiss. He always was a master greeter! The only name he called out was when he said, "Oh Mama" in such a way that you knew it had to be her. I am so happy that dad is in no pain. What a godsend. Prayers and hugs coming your way from so many people around the world!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Sensitive: End stage

Andie, it is nothing short of amazing how you, your mom, and dad are working together.  I am so glad your dad has excepted help from everyone.  While we did have someone help with my dad's showers,  it took a few of us to ensure my dad's safety.  Slippery when wet!  As said, I hope bathroom will not become an issue for you, but it was for my dad.  My dad was in a coma for 8 days before he passed and my sister and I had to take care of his needs up until the end.  I'm telling you this because it really wasn't as hard as I thought it would be.  I became so protective of him and I just knew I had to make him comfortable anyway I could.  My thoughts and prayers go out to you In these upcoming days.  Try to rest when you can.  Pam

Re: Sensitive: End stage

Andrea,
As others have said, you are doing EVERYTHING right.  It's awful that the one nurse was so nasty (and stupid, really... considering what she does for a living, you would think she would understand the concept of sensitivity, which she clearly DOES NOT).  I'm so glad the other nurses are being so helpful, and that your Dad is comfortable with them being around.  It sounds like they are ready for whatever may come, which is fantastic. 
I know the next few days are going to be very hard, but it sounds like you are doing what needs to be done to ensure your Dad is at peace, and I know he must be so incredibly proud of you and your Mom for the way you are handling everything right now.  I hope his new found calmness continues with you and your Mom being the ones by his side, and that he remains pain free. 
I am thinking of you and your family constantly, Andrea, and pray for peace and comfort for you all.

Jen

Re: Sensitive: End stage

Hya Andrea and mom

You will manage, I know you can do this both for mom and dad.
You will get opposite people thats for sure but have to agree with you District nurses fantastic. I have washed down and cared for both Alan and his Dad thats how I know mom will do it.

Later it will help her to know, she did the hardest thing in life someone can do for another person. We all pass by but once and for you both to do this will one day give you the ultimate feeling that your dad had you both to tend, love and care for him at this level. For me and you I believe it is the highest accolade in life that we will get to achieve.
Giving of ourselves completely to another.
May God keep you all in his tender care. love and light Alan's mom

U.K.Member

Re: Sensitive: End stage

I think you and your Mom are doing a fantastic gift of love.  My husband had been wheelchair bound for over 20 years.  While he was in the hospital I had to help him into the chair, go in help him transfer out and back in, then help into the bed.  Wayne passed away one year ago from yesterday, he was able to go into the bathroom with help, the last time was the day before he went to heaven.  They transfered him to hospice that day, he lived about 27 hours in hospice inpatient.  That last day he only spoke two times.  I have been in denial ever since, my  brain knows he is in heaven, but my heart wants him to be with me. 
I will be thinking and praying for you and your Mom, and peace to your Dad.

Love to my Wayne for 36 years
I'm not a widow, I am a wife
We are only apart for heaven's sake
You are waiting for me at heaven's gate

Re: Sensitive: End stage

Andie,

You and your mum are doing everything that you can for your dad right now. I know that from this time with my dad that the days ahead are tough, but you are strong and I know that you will continue to do what your dad needs right now. This time is indeed bittersweet as others have said, but treasure this time.

You are constantly in my thoughts and I wish for peace for your dad. We are all here for you.

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Sensitive: End stage

Dear Andrea

Please know thoughts and prayers are with you, your mum and your dad, during this difficult time. 

Helen xx

Re: Sensitive: End stage

Hi Andie,

I'm thinking of you all and wishing you strength.  This is so unbelievably hard for you and I wish I could help.  I think Alan's mom has written some incredible words here.  Thinking of you lots and hoping for peace for you all.

Kate

Re: Sensitive: End stage

Andie,

Just want you to know I am keeping you and your family in my thoughts and prayers.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Sensitive: End stage

I feel truly sorry for you Andie, and your Mother. I have not visited this site for a couple of weeks as my wife, Judy, is in about the same shape as your dad. This has got to be the toughest times of our lives. Judy doesn't get mad but I can see the hurt in her face every time me or one of our girls has to help her with something. Our hospice nurse has let us dictate every move she makes. I'm sure she will take control of the situation when the time comes. I'm with everyone else, you are doing a fine job. Some dads just know how to raise wonderful kids and I think your dad was one of them. I can only hope I helped my wife with our 3 girls. I don't think I have ever been this tired in all my life, and I have tons of help. The one thing that helps me more than anything else is a restful sleep. Hard to come by though. Hang in there Andie and know that your dad loves you.                                                                                                                              One last thing, Hi Lainy.                Tommy