Feeling Angry and Guilty = Totally confused

[bubsy]

Where do I start.. my dad has MND, no one has told us what type but he's progressed quite a bit over the past few months. He has been told that from he's recent test that it's quite likely by dec he'll have lost his speech entirely and won't be able to swallow. He's also been given priority appt with a respiratory doctor and dietician. He's memory has started to be affected.
He has a trip booked for this christmas to Florida with my mum, sister and niece, however given the things that are happening now we are concerned that he may not be in a position to enjoy it, so we made the suggestion to perhaps bring it forward and for us all to go then we can also spend christmas together. We said it was just an idea and just wanted to know what he thought of it, he said he couldn't see the point he's been told that people go on for fifteen or more years. We said that we hoped that was the case but the disease is progressive and there is now cure and based on how much things have changed we were trying to be realistic and make the most of time as we do not know how much there is left. He stomped out of the room and refused to talk about it, he later said to my mum that if we all keep telling him what's happening and talking about it he will make sure he isn't here come october ! So my mum has told myself and my sister that we are not allowed to talk to my dad about 'IT' anymore.
They are also flying out to Spain tomorrow for 10 days, and only informed me that they have insurance but not one that covers MND ( they also have hols booked for a month in spain in July and another 2 weeks in Sept plus USA in dec) .so I spent the best part of this afternoon ringing MND association, and various ins companies to find him cover at the best possible price. I found the best price and rang them, mum said Dad wouldn;t pay it and when I spoke to him he refused to take it. I am so cross because god forbid if anything happens they have no medical cover for MND but what can I do if I had the money I would have purchased it for him but I am very hard up so couldn't. So tonight about an hour ago I rang my mum to wish them a good holiday and my mum starts on about the insurance and how my dad refused it, I happened to say that I would have booked it if I had the money and my mum proceeded to scream and swear down the phone to me saying that I am making her feel like she should be doing something about it, I explained that all I meant was that I would have paid so I knew he's get the care he needed should things worsen while he's away, mum accused me of implying that I had wasted my afternoon doing this, I told her I;d have spent the past week doing it had I known sooner, I ended up sobbing because i was hurt at how she was talking to me. She put the phone down on me. Rang back about five mins later and proceeded to go through it all again, I was sobbing at this point ( have not cried around my mum since dad diagnosed in dec 09) and she told be to stop being so melodramatic, I told her I was upset as she was unkind and asked her why she would want to argue with me as I was only calling to wish them a nice holiday, she then said that she would have booked the ins if she had the money ( she does have the money but not for me to say what she should spend it on) and would have researched the ins if she had the time.

I am angry because she should not have spoken to me like that, I am angry at my dad because he should not be using emotional blackmail to prevent us from talking about what's happening, I am angry because my mum does have plenty of money ( they both have) and I am cross because she has had time, she took voluntary redundancy earlier this year and has had plenty of time over the past few weeks to look at new curtains and cushion covers for their new house ( they move in 3 weeks) and the money to buy new wardrobes 2 lots ( all over £1000 ) new bedding ..why isn;t insuring my dad important to both of them? I feel guilty because I played a part in my dad feeling that way .. I have no right to judge what they spend their money on or how they spend their time. I feel guilty because I am gutted my mum spoke to me the way she did then sat here thinking of all the help and support I have given them both since all this started more so than anyone else around them, yet they are being unkind and hurtful, I wrote my dad a card which told him how I felt about him, how proud I was to have him as a dad, how I wish he'd talk a little more about how he feels, how he inspires me...he hasn;t acknowledge it, I know he has received it, and I know he has read it, I am hurt... I feel guilty for this. It;s him it's happening to and it;s not about me but I feel soo cross, frustrated, guilty, hurt ... confused. and I am just really tearful I don't want to feel like this... it's not their fault ...help!?:-(

 

[bubsy]

Sorry this sounds really self pitying, I've just read it back....sorry

 

[abbas child]

Bubsy... no one knows how they'll react when given a diagnosis like this. I'll take a leap and suggest they aren't ready yet to deal with the ultimate end, which is why the suggestion about bringing forward the Florida trip drew anger, as did the insurance when you were attempting to help them understand. You are more ready to look reality in the face than either of your parents, but since it basically is your Mother and Father's to plan, you can't do anything right now other than accept this reality. When your father is experiencing the reality of the losses, which may include frontal lobe dementia ( I take that from your comment about his memory at the beginning of your post), it's just a horror to absorb.

It really helps to figure out what you can't change and then let that go. For the moment, it looks like you can't change their reactions, so duck before you get hit again and just wait.... even if it seems crazy to you. If you can step back and realize there will come a day when your help will be wanted and needed, that's my take on this. And, I am so very sorry.
Ann

 

[bubsy]

Thanks Ann for yr advice, it makes sense and really helps to make some sense of it. I think just sometimes it's not always easy to take that step back and see the other reasons for reactions..thank you.. Best wishes to you Claire xx

 

[Miss]

I am a bit like you, Claire. I am a realist, and I want to tackle the problem head on - make a plan. My husband is not like this and has gotten very upset with me on occassion for getting our "ducks in a row". Now that he has been firmly diagnosed with ALS, be is glad that I did know what we needed to do to take care of business.

I agree with you, by the way. Having lived in Europe, I understand just how insurance over there works. It is very different from the U.S. We are insured wherever we go. Over there, you buy separate policies for coverage. I think all you can do is pray that nothing occurs with the MND while they are on holiday in Spain. You have put the information out there. Your Mom and Dad are adults. It's up to them to either use it or discard it.

My thoughts are with you.

 

[bubsy]

Thank you missy, I know that's the case, I've done all I can, I have to respect their wishes... My thoughts are also with you x

 

[Blubear]

Oh Busby, does this sound so familiar to me! My dad was diagnosed in Sept last year. Boy let me tell you, my mom let me have it every chance she got. It's called "displaced anger". I mean heart wrenching, mean spirited, yelling, threatening me with all kinds of things that were way out of left field. Luckily, (well I guess I could call this luck in this aspect) I had just gone through 2 years of grief counseling for the sudden death of my husband in 2007. Believe it or not, grief is a part of all of this diagnosed process. I was able to peg my mom for not being realistic, and not herself. In fact, I was being verbally attacked by both her and my sister. So was my poor daughter. But, we both knew what it was and it was not rational. So, we were able to let it go. I didn't react to it. I know it is hard not to be hurt, but it is an actual process of grieving, truly it is. They want to live in the denial stage, that is where they are with the grief process. My mom and dad just came out of that stage about 6 weeks ago. Until then, it was "Dont you even think to talk to dad about getting a wheelchair! He is not thinking he will need one!" I had to bite my tongue because my way of coping was to come here and learn everything I could to try and help them in the future. I just patiently waited and let them know that I was learning everything I could, so they could try and live their lives as normal as possible and not to think about the disease until they were ready. It has been hard. But now FINALLY they listen to me, my dad respects and actually listens and takes my advice. Slowly, they are letting me help more and more. Now, you say that there are signs of dementia, well what signs exactly? Because, with high stress, shock, disbelief, depression etc, it causes short term memory loss. I have noticed this more and more with both my parents. That is normal. Now remember this too, they dont see it as being a "family" disease yet either. It affects everyone in the family. With my parents, they tried to just keep the diagnosed and how they handled it as their own personal business. It will affect your mom differently than it will you. She is losing her partner in life, her future. You are losing your dad. Its terrible, but it is different. I figure my role is to be as patient as possible, and to be there as much for my mom as for my dad.
~On another note! I am a travel agent, and I have never ever heard of any insurance that will cover you while you travel if you have a pre-existing condition. If that does exist in Europe, can you please let me know the name of the insurance company you found? I try and help PALS out here with travel, and I would LOVE to know about this.
Hang in there, and dont take things personal hun. If you ever want to talk just message me. I have been where you are!
Hugs, Kari

 

[JeffP]

im so sorry for you to have to go through this .these are your parents and can see that you really care and are trying to look out for there best interest .its a hard thing for someone who has the illness to deal with it. like abbas child said that would be the best thing to do now just step back and let it runs its course.i no it will be so very hard but you cant change there mind .the best advice i was told when i had no control was let go let god i will be praying for your family jeffp

 

[bubsy]

Thanks Jeff, things have changed so much since this thread, Dad has just stopped eating. His swallowing is awful , his speech really detiorated and they have said he must have a peg. and he is waiting for an appointment for a respiratory doc.since then he seems to have lost his fighting spirit, he;s not eating at all.. I admire all you guys that have this and can still smile.... really I do .. I wish I could find a cure ..this is without doubt for all those who have this illness Hell on earth ..love and best wishes

 

[MickeyMouse]

Yes, busby, you said it all...... ALS for me has been exactly like hell on earth. I think us 'planners' suffer a little extra because we want everything figured out. And that's not at all what others are concerned about.

It sounds like your dad is progressing a bit faster. I wishing you strength for the days ahead. Please let us know how it goes hun.

 

[tdamess]

i will keep you in my thoughts and prayers and your family also we all feel so helpless in finding a cure or even something to stop the progression to me it is one of the worst feelings in the world

 

[Twinsmom]

Dear Bubsy,
I'm sorry things are progressing so quickly. I pray you and your family have the courage to face the days ahead with grace and compassion. Every one chooses how to live this journey with ALS. I hope you can be at peace with your dad's choice so that you can have quality time with him during the days ahead.

Peace,
Melody