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Dad won't let us help 
Started by NiteLad
24 Feb 2013, 4:10 AM

I’ve thought about posting here for quite some time, but never really knew what or how to say what was going through my mind.  So if I get a little long winded, I hope you won’t mind.

My Dad is nearing the end stages of his battle with pancreatic cancer.  He was diagnosed in November 2011, when he was in the hospital after a stroke.  It has been, and continues to be, a long haul.  My Dad is 76, and my Mom is 75, but it seems like Dad is more like 100 and Mom is 60.  I moved in to my parent’s basement this past summer to lend a hand.  I am 47.  My sister is 44, and she and my nephew live a few doors down in the same townhome complex.  We are close by, but we live in a relatively small town, so that means 30-90 minute travel times to more advanced care than the family doctor’s office.

I have been getting increasingly frustrated and angry with my Dad.   He has gotten to the point where is very unstable on his feet, has begun falling occasionally on the stairs or when he tries to get in/out of bed.  Yet he refuses any kind of mobility aid.  He insists on going up and down the stairs to his bedroom.  He is now unable to get in and out of the bathtub on his own, but refuses any offer of help from anyone.  He is also now often not making it to the toilet in time.  Things were getting so bad 2 or 3 weeks ago that we had a bit of a “family intervention” as he had not bathed in almost 2 weeks.  We finally had one of the community nursing coordinators in to do an assessment, but Dad won’t allow any home care nurses in the house.  He eats almost nothing, but complains about what my Mom cooks – and Mom bends over backwards to make things he likes – or used to like.  Dad only wants Mom to help him, but my Mom is ready to break down emotionally and physically.  

My sister tries to reason with my Dad, but he is as stubborn as a mule.  So I feel the need to play the “bad guy” sometimes and insist things are done or talked about.  I have made it clear to Dad that I think he is treating Mom like a Cook/housekeeper/Maid and that it infuriates me.  That Mom is not capable of helping him up after he falls down, and did he really want us to have to call his grandson to help at 3am?  We have all tried to tell him he is not the only one going through this battle with cancer – we all are.  I have tried to remind him that he looked after my sister and I when we were too little to care for ourselves, and that it was time for him to let us look after him.  But I feel like I am bashing my head against a brick wall.  We don’t feel like we can leave him home alone any more.  He refuses to even consider the idea of respite care.

I get that he does not want to feel like he is losing control of his life.  And I get that he may not want to go to respite care in case he never comes home again.  I understand all that…. But I still feel like this is all being crammed down my throat.  I worry about my Mom, my sister who is now drinking too much, and my nephew.  I love my Dad dearly, and we have been able to repair a lot between us since his terminal diagnosis.  But there are times I just want to scream when he is being so hard headed and stubborn.

Is anyone/has anyone experienced this?  Any thoughts would be appreciated.

Nite 

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Reply by marstin
24 Feb 2013, 9:32 AM
Hi Nitelad,

It sure sounds like you are at your wits end and understandably so. I feel the pain that all of this is causing the family. Is this your dad's nature or has there been a change in medication? I have not been through exactly what you are dealing with but I know that my husband at one point in his cancer treatment was on medication that made him fall easily. I also remember how when my dad was failing he would fall in the middle of the night and my husband would have to go over and get him back into bed. My poor mom went through hell trying to take care of him, clean him up, and put up with his nastiness as he was a very stubborn man. Your dad's lack of eating is not uncommon in the later stages of cancer, the body just does not need the food anymore. We tried everything with my husband but he just had no interest.

My biggest concern is with what is happening with the rest of the family. I can imagine how difficult this is for your mom when she does everything that she can to please him and nothing seems to work. I know how painful it was for me to watch my precious mom try so hard to 'fix' things as I was always the one to prop her up when she was feeling overwhelmed. I was her lifeline. What is your family doctor telling you to do? It sounds like you've reached a point where you may have to go against your dad's wishes and have him moved somewhere so that he can have round the clock care. That is never an easy decision to make but it sounds like your family is at breaking point. Is there any kind of councelling available to you? First and foremost you need to take care of yourselves, you also count in all of this. It is very difficult to do this I know but it is also crucial to your wellbeing.

I know that there are others on this forum who have gone through similar situations and will respond to you. I just want you to know that you have found a place where you will be supported every step of the way whenever you want to talk. I lost my husband to cancer 7 months ago and my mom soon after and if I hadn't found this place to share my pain and fears, I would have lost my mind. Please keep sharing, we're all here for you.

Hugs,
Tracie
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Reply by NiteLad
25 Feb 2013, 5:50 AM
Hi Tracie,

Thanks for writing.  It has been a really rough weekend.  My head is pounding and my stomach is in knots.  I am sure many who read this have been there.  Dad has really gone downhill over the last week.  He has an appointment with the Oncologist tomorrow (monday) morning, so hopefully things will happen after that.  We have kind of been in a holding pattern over since friday.  The community care nurse dropped in un-announced today to check on Dad, and was quite shocked at how much he had changed since she saw him about 10 days ago.  He is hardly eating or drinking now, and has developed a pressure sore on his left hip.  He is dehydrated, and his blood pressure is quite low.  He is also now in a lot of pain.  We all think he should at least go into respite care to get him stabilized, but he won't go.  So hopefully if the Doctor suggests it tomorrow, he will listen to a "professional" and go.  He won't listen to the nurses or any of us.  He is so stubborn, sometimes I just want to smack him (Not really physically, but you know what I mean).  He is an incredibly frustrating man.  I sometimes have no idea how my Mom has stood by him for over 50 years!  Strong woman, for sure.
 
Anyway.....  Yes, I am really starting to have trouble keeping it all together.  My Dad's nature is to be stubborn and not take advice or suggestion.  He was also an active alcoholic until his stroke and cancer diagnosis made him quit.  He is the type of man who "keeps his cards close", and has never been very emotional or communicative.  Completely opposite from my Mom.  He has always been very concerned about what people will see, or what people will think.  But having said that, he has been 10x worse since his pain has increased over the last week.  It has been a battle getting him to take his pain meds because he doesn't even want to take an aspirin.  He has never really got the concept that you take the meds BEFORE the pain gets unbearable.  He thinks you only take pain meds when you feel pain.  In fact, about a year and a half or so ago, before he got on his current pain meds, I couldn't even be near him he was so horrible to be around.  That really screws with your head... a family member dying but being so miserable you don't want to spend time with him.
 
In some ways I am glad that I am living in the basement of my parents house, as it does give me some space.  But I am also feeling like I have to look after my Mom as well, and keep an eye on my sister and nephew too.  Plus work full time (afternoon shift), and look after my diabetic cat who gets insulin 2x a day.  Aaaargh! Mom is able to get out to her horse every day and ride, and have a social outlet at the barn with her friends.  I have made sure she knows what community supports are there for her should she need them, but she feels it is necessary to stick close to home because of Dad.  My sister is not dealing with things very well at all.  She comes to spend time with Dad, but then goes home and cries for hours.  She is also notthe type to accept help, and like Dad, she drinks too much.  I on the other hand don't drink at all.  So far my nephew seems OK, but who knows what really goes on in the mind of a 15/16 year old boy?  lol  I try to be supportive.... but don't want to meddle too much.

As for me, I see therapist fairly regularly, but may ask to come in more frequently in light of recent events.  I try to keep active as well, but with a bad back, that is often hard to do.  I will becking in with my family Doctor tomorrow regarding my back, but I will update him on what is going on.  I am also aware of resources through my Employee benefits, as well as the good old internet.  So I think I am doing all the right things, and all the things I am going through are normal/common.  But that doesn't always make it any easier.  Sometimes I just want to scream, or cry, or both.

Thats about all I can manage for today.  Will try to update you after the Dr visit.
 
Thanks again for responding...  Nite
 
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Reply by marstin
25 Feb 2013, 5:35 PM
Hi NiteLad,

First of all I commend you for seeing a therapist. I wish I could push myself to see one not only because of losing my husband and my mom just weeks apart but for the pain that my dad caused me throughout my lifetime. Your dad sounds so similar to mine and with or without alcohol he was a very cruel man. It has been 5 years since his passing and I can still feel so much of the pain he caused me throughout my life. My brother has taken over that put down feeling I always got with my dad so I have to avoid him these days. It sounds like maybe your sister is also in so much pain and that it isn't something new, it's just an extension of what has happened throughout  her life. My heart goes out to all of you.

My mom was a kind and wonderful lady who put up with my dad's abusive nature for over 50 years also. I could never figure out why she stayed but she did. I became her voice when he would go into tirades as I was the only one who would stick up for her. My brother would just stay away. When my dad passed away, my mom missed him and made excuses for his rotten behavior because he had a lousy childhood. I believe that because she had lived that lifestyle for so long that she felt she deserved that kind of treatment. I don't think she ever realized the scars that he left on myself and I guess on my brother also who views the past quite differently.

I hope that all goes well with the doctor today. The not wanting to eat or drink is quite common near the end of life. My husband's nurse was away for a week and he too was so shocked when he returned, to see how much my husband had declined. The pain can be managed so that he is not suffering so much. I'm not sure but I would think that at this time, the choice of whether to be hospitalized or not is probably in your mom's hands and that she is afraid to make that choice and further infuriate your dad. She probably would feel that she failed in her role as wife. I hope this makes sense to you.

Thank you for reaching out. You sound like an incredible son to have put your life on hold while you help your mom and deal with all of the emotions that this illness has brought to surface. Please let me know what the outcome of today was when you feel able to.

Hugs,
Tracie
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Reply by NiteLad
27 Feb 2013, 4:41 AM
Just wanted to let you know that Dad went into Hospice care today.  He had another fall early this morning and we had to wake up my nephew to help get him up as he fell between the toilet and the sink in the small main floor half-bath.  I think Dad finally admitted to himself that he couldn't be at home anymore. We are all upset at this turn of events, obviously, but at the same time also very relieved.  We have all been exhausted at keeping a constant vigil around Dad at home, especially Mom.  Things are still sinking in, but just wanted you to know how things are going.  Will write some more later when I am not such a wreck.  Looking forward to some rest without keeping an eye half open, if you know what I mean.

NiteLad 
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Reply by marstin
27 Feb 2013, 7:00 PM
Hi NiteLad,

Thanks so much for the update. I hope that you managed to get some sleep last night. I know that as difficult as it was to make the decision to send your dad to Hospice care, allowing professionals to care for your dad will definitely take the burden off of you and your mom. They are wonderfully kind people that do this type of work. Although we cared for my husband at home during his final month, I also had a plan in place to send him to Hospice if I felt unable to deal with the issues as they arose. He went so quickly that we didn't have to take that route but I definitely would have. I hope you and your family are taking care of yourselves. It can be so easy to forget that we count too. Just know that we are thinking of you and are here whenever you want to talk.

Hugs,
Tracie
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Reply by NiteLad
01 Mar 2013, 7:08 AM
Hi there....  I'm hanging in there.  Doing my best to eat and rest.  Dad is still quite fragile, but he now has an IV line in place so that he can get his pain medication without problems.  Dad is now bedridden, and can no longer swallow very well.  He is sleeping most of the time, but showed some interest today in having some music playing in his room.  It is a day at a time now, as you can imagine.  Work has been very good about letting me work or leave early as I choose, depending on how I am feeling.  Just tring to get through this week as I can't afford to miss any more work.  My sister and Mom are already making funeral/memorial plans, which I am finding a little too overwhelming at the moment.  Still feeling like I am moving through mud/fog, but not as bad as earlier this week.

That's all for now......  Thanks...

NiteLad 
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Reply by marstin
01 Mar 2013, 7:37 AM
Hi NiteLad,

I'm glad to hear that you are trying to take care for yourself. It's good to know that your work is sympathetic to what is going on in your life.  It must bring some consolation that your dad is much more comfortable now and not in so much pain.

I think that for most of us, we think of mourning as being something that happens when someone passes away but in my mind we begin that process when we accept what the outcome will be and that we can't change or alter what is happening. I know that when my mom went into the hospital the day after my husband passed, I was in that acceptance mode and stayed that way until she passed just over 7 weeks later. I think that if I hadn't reached that point in that cruel turn of events, that I would have lost my mind. The foggy state is an okay place to be, it is your minds way of protecting you until you are able to process what is happening.

Take care,
Tracie
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Reply by Plum1
02 Mar 2013, 1:29 AM
Dear Nitelad,

I am just beginning to read the conversation that has been going on between you and Marstin, and want you to know that I am with you during this very stressful and painful time for you and your family. While I cannot identify with all of your story, there are several parts of it which are most familiar if not in my own life, then through the lives of close friends.

You have described the compliexity of your reality very well, and I am so glad that you have found this forum in which you can express all that your are thinking and feeling freely wiithout feeling you will be judged. All that you express is so very human. You have been in the midst of a complex human situation where something had to change or break. As you said, as you and the nurse assessed the situation, it was clear that your Dad could not continue to live at home without help. Someone was going to have to make that decision, and everyone was afraid to do so because of your father's anger and insistance. Thank God, you were all saved by your Dad own's fragility and diminishment. His dangerous fall finally brought home to him what you had all been trying to help him realize. He was desperately trying to deny, something he was very skilled at doing as an alcoholic. Finally, he could no longer deny. He had crashed, literally. My mother does not have cancer, but in her diminshment, she fell many times. Our greatest fear was of her falling in the bathroom because of the danger of falling into such solid objects.

Your Dad's rapid decline is very difficult to see and take in. I feel for all of you. I am so glad that he is now in hospice where you can know he is being well cared for. Perhaps he is even grateful for the security, safety, and loving attention. I am sad that the rest of the family is left with wounds from the struggle over the last while, indeed from a lifetime of living with the disease of alcoholism and its many consequences in family dynamics. 

Marstin is so right as she emphasizes that you all must care for yourselves as much as you can. Accompanying your Dad has, and continues to be, exhausting emotionally, physically, and spiritually. It is great that you are seeing a therapist, and will ask to increase the frequency of your sessions. That sounds very wise. You may need that support for a good while to come. I can only hope that your sister and mother might seed similar help. However, each person is very different, and you can only respect what each chooses. I can hear that you are very worried about the possibility that problem-drinking/alcoholism may be a chosen route to handle the painful feelings aroused by your Dad's death. You cannot control that. You can only give attention to your own healing and groundedness. The energy of your healing will, in one way or another, affect the other members of the family. 

I am touched by the love which shines through all the pain and brokenness. As you say, you love your father dearly. And your love motivated you to seek reconciliation with him over this last while. Your mother has been faithfully loving in such practical ways, and in her presence. And your sister has been lovingly present even when it was costing her greately. Now, your sister and mother are lovingly preparing a funeral. If they are able to do that, let them take that leadership. You have been taking leadership in many ways all along, and now are just needing some time of rest.  That is how it works in close relationships. Each person does what he or she can at each moment. Sometimes one has the energy to respond, and at other times, it is another who steps forward.

Your journey together is far from over. These last days with your father may be surprising. I hope that he can accept the care that is being given, and that you will have some precious moments with him. However, you can only go with what will unfold. Be gentle with all your feelings, and with your fogginess. I am sure that Marstin will have more wisdom to share from her recent experience with loss and grief. As she says, the grieving has already begun for you and your family.

Do keep sharing with us. Do you have any particular needs at this time? Besides the therapist, do you have any other close friends with whom you can share? What in your life brings you peace or strength as your Mom finds in riding her horse and being at the barn with her friends?

I send you energy of love and peace.
Plum1 

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Reply by NiteLad
03 Mar 2013, 5:39 AM
I'm exhausted.  I have a headache.  I am trying to eat, but struggling to keep any food down.  I can't sleep.  I know this is all "normal" but it still sucks.
 

Dad has continued to get worse as the week has passed.  It has been absolutely stunning and heartbreaking, even though it has been no surprise.  It just seemed like it has happened too fast.  He is no longer eating or drinking, and requires pain medication about every 2 hours.  The Hospice Staff do not know if he will survive the night.  My sister spent the afternoon with him and Mom.   I spent 4 hours this evening with him and Mom, and brought dinner in for us.  Mom is spending the night by his bedside.  My sister an I have said our goodbyes and expressed our love.
 

At one point my Mom had left the room to get something to drink, and my Dad seemed to wake up for a moment and looked very distressed.  He looked at me and said "Help me... please Help me"  This from the man who refused all help and kept going by sheer willpower.  It almost ripped my heart out.  We have all told him how much he is loved, and that we will all be OK if he needs to go, that it is all right.   My Mom and I both feel like Dad doesn't want either of us children to see him in these last moments, it seems to agitate him more.  He has always been a very private man.
 

I am torn.  I feel like I should be there until he dies, but I also really don't want to.  My Mom has said that is Ok with her, and that she is fine staying there with him - she says thay have been together almost 60 years.  I have never EVER seen her so tender and loving to my Dad, stroking his face and calling him sweetie.  I want him to die so he will not suffer any more pain, but I also don't want to loose my Daddy.  I also hope he does die tonight, because I don't want to go through this again tomorrow, and I feel sort of bad about that too.
 

I am waiting for my Dad to die, and this sucks so bad.  Dreading when the phone rings, but wanting it to be over as well.  My heart is breaking, and I wonder how people get through this - but I know we do.

NiteLad 
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