I'm upset- the family is falling apart!

[Why my Dad]

Dad is 82 and just diagnosed with ALS on Oct 7/09. He had trouble keeping his balance about 5 years ago and was diagnosed with having a stroke. Since then, he has gradually lost strength in his legs. He started using a walker off and on about 4 years ago but he also had circulation problems in his legs. He had arterial bypass surgery on his right leg in Feb/07 and has used his walker constantly since then as he was so afraid of falling. His speech became affected about 2 years ago and we noticed that he was slobbering too. I moved in with my Mom and Dad almost 8 years ago to help as my Mom was diagnosed with cancer. She passed away Oct/06. Then my brother was lived with us for a year as he had become ill with cirrhosis. My brother passed away Mar/09. Right after my brother passed away, Dad had to have a permanent catheter inserted as his bladder wasn't working. At that time, we were able to obtain some in-home assistance for him for awhile. A physiotherapist and speech therapist came to teach him exercises to help build strength in his legs and to help with swallowing. I had been advised to contact the Geriatric clinic at our hospital to have Dad assessed as well. It was these nurses who advised us to take Dad to a neurologist where he was diagnosed with Lou Gehrigs.

Dad says he feels worse everyday. He has trouble swallowing and feels as if he can't clear his throat all the time. He said that he feels as if there is mucous that he can't cough up - so he keeps clearing his throat..sometimes for hours - trying to be able to cough. All of this is so scary for him and I try to be positive - but it is very hard when there is no hope for his future. My Dad was always the strength of our family. He loves his family dearly and has always, always been there for us anytime we needed him. He is a kind, loving and fair man who never judges others. Even now, he doesn't talk much about this disease as he doesn't want to upset his girls...but I see him sitting on the side of his bed with his head down - worrying. It is heart-breaking. I don't know what to say to him and I can't make things better.

It has only been a month since Dad was diagnosed with ALS. The neurologist told him that all of his muscles will grow weaker and that eventually - it will affect his breathing as well. He said most people end up with pnemonia and that is how they pass away. I think that is why my Dad is so worried that he isn't able to cough right. We have no idea how much time he has or what he will go through as we don't know how long he has had ALS. I do know that it has only been a month now since he was told he has this horrible disease and I have already seen a big change in him. He can no longer use his walker as his legs won't hold him up and I have to be very careful what I am cooking for him so that he doesn't choke. As there is no hope - Dad gets very depressed now...he just isn't the same happy, joking person anymore.

Our local Community Cares Access Centre has come in to assess him again and we were told he will get help from a physiotherapist and an occupational therapist. Although a nurse comes once a month to change his cathater - I worry that this isn't enough as I am not a nurse and I don't know what to do when things don't seem right. He has been up for the last 2 nights...making the noises where he sounds like he is trying to clear his throat. He ends up with a headache and feels short of breath. What do I do to help him? How do I know if he is getting pnemonia? He says that his whole body aches - and that he feels best when he lays on his bed so he is laying down a lot. Now - where the cathater goes into his body below his belly button, I am having to clean it all the time as it looks like it is getting infected. I think that - because he is laying down, the urine bag isn't below his body level and it backs up. I have tried to convince him to undo the bag when he is laying down and to let it hang off his bed...but he said that he doesn't remember the nurse saying that and he doesn't think that is what the problem is. (He is very stubborn - and - he still wants to make his own decisions so it is difficult to get his cooperation sometimes...).

I ended up being off work for health problems of my own in May. I have since been diagnosed with Irritable Bowel Syndrome however - while I was off work, my position was eliminated so I no longer have a job (I worked in Social Services). Money is tight but - things happen for a reason and Dad can't be left alone. With all of the stress that came along with learning that Dad has ALS, there has been some conflict in the family as well so that has caused additional stress for both Dad and myself.

Please let me tell you about it....I have 2 sisters - one who lives 4 hours away and the other who lives 5 minutes away. Although they call Dad - or pop in to see him, I am the one who is with Dad 24 hours a day. My one sister helped to take my Mom, my brother, and my Dad to some of their appointments when I was working but neither of them understand how much is involved with caring for Dad on a daily basis. As my Mom's cancer advanced, I was allowed to work at home for a couple of months so that I would be here for her as Dad was not steady enough on his feet to help her. As time has gone on...after caring for Mom, my brother and now my Dad - I have found that all I do is defend myself every time I talked to one of my sisters. I finally took a stand as I could not take their criticism any longer. I don't expect thanks or praise for being here to take care of Dad...but I would like some support and understanding of how hard it is sometimes. When I stood up for myself - it caused a huge argument and now neither of my sisters are speaking to me. They believe that I am here to benefit in some way and that is the only reason I moved in to help Mom and Dad 8 years ago. No matter what I said to defend myself, they didn't believe me. Dad tried to talk to them as well but they feel that he is only sticking up for me.

On Thanksgiving weekend - only 2 weeks after finding out my Dad had Lou Gehrigs, my sister told me that if anything happens to Dad, I had better be prepared to move in a month as they would have to come in and clean up the house to get it sold. Both of my sisters also advised me to start packing things I don't use so that I don't have to do it in a hurry in the end. Well, this really bothered me. I tried to explain to them that they have no idea how this is affecting me inside. I have been through my Mom's illness...then my brother's and all the while my Dad's health was deteriorating...but I had to keep strong for Dad. For me to start packing now is like saying "the end"...and I am worried about how well I will handle it all. I was looking for some compassion but - my sister said that it is reality. If Dad passes away, none of us can afford to keep the house going. The house isn't worth much and Dad has a mortgage on it so it isn't as if there will be much money left in the end anyhow. And - I tried to tell them that Dad could be here for another 3 years! But - Dad had lent me money...and as I am now unable to work because I am taking care of him...he doesn't want me to pay back the money I owe. Thus....my sisters think I have manipulated him - and have been all along. My one sister even said "I wish I could just sit at home everyday!" She came here purposely to "set me straight" - telling Dad she didn't care about the money...she only cared about him but that if he lent me money, he should be lending it to my other sister as well. She viciously attacked me for a half hour, screaming in from of our father making accusations that were not true and stating her opinion on things that concerned my children and were none of her business. Both of my sisters have been talking and have come up with their own conclusions on why I moved in here. Although I paid Dad $500 mth rent for 7 years until this past January - my sister doesn't believe this to be true. We never claimed the rent on income tax and we gave Dad cash...why would I need a receipt from my own father. Neither one of them has ever been involved much in the care of our parents or my brother and they aren't here to help at all with our Dad. They have never had to try to dress Dad...or get him into the shower - or onto the toilet. They aren't up off and on all night listening to his coughing on the baby monitor or watching him sit at the side of his bed with his head down...thinking.

I'm sorry - I hope it is ok for me to write all of this. I am now feeling alienated from my nieces and nephews as well as I believe my sisters have somehow made me out to be some horrible daughter...after being around here and seeing what I do for almost 8 years - and there is nothing I can do. I am the oldest daughter and I've always been the peace-maker...willing to forgive and forget so that everyone is getting along but now, when we need them most, my sisters are making assumptions and these assumptions are tearing our family apart...and putting additional stress on their own father - our Dad...remember? the one just diagnosed with Lou Gehrigs. It is enough trying to accept that our Dad is going to have a really rough road ahead of him without playing these games. Again - I'm sorry...I'm angry and I'm hurt.

Thanks for listening...whoever reads this. I am just feeling down tonight and wanting to "vent".

 

[cris]

Dear why my dad, I'm so very sorry to hear about all that you are having to endure. This disease sucks and draws the life blood out of us at times..But the Lord is always at your side. H e will help you through this and when the time is right your sisters will see the light. Just try to hang in there and don't worry too much about htem and their opinions...taking care of yourself and your dad is all you need for now.

Have you looked into getting your dad a 'cough-assist' machine? My husband was not sure about it till he had a bad spell...then it helped him move the phlem. Now he uses it any time he needs to clean his throat or cough.

Remember that the Lord will never give you more than you can handle...My prayers are w/ you and yours!

 

[Why my Dad]

Thank you so very much for the suggestion of a 'cough-assist' machine. Although I have read the information on the ALS site, I don't know anything about what he is going to need. An Occupational therapist came here to assess him today - and she is ordering a couple of poles to be installed so that he can help to pull himself up...but he barely has any strength in his legs and his overall body strength is decreasing - so he may be able to pull himself up to sitting but I don't know how they expect he will be able to hold himself up in the shower...or to standing by his bed when I help to dress him. We also have a physiotherapist coming next Monday - and maybe she would be the one who would suggest this cough assist machine...it is all so very confusing. I have left a message with the casemanager as I am hoping that a nurse can come in more often to check his breathing. It is so much responsibility when I don't have any idea what I am doing...so it is a little scary for me right now.

I sure hope my sisters come around...it is so hard to believe how they are behaving when Dad should be all we are concerned about right now. I am very hurt - but I try to be positive around Dad as he has enough on his mind.

It is so strange that you would write "Remember - the Lord will never give you more than you can handle..." My Mom used to say that to me - and she had other sayings that have kept me going through some rough times. "Things happen for a reason" and "things have a way of working themselves out"....these are other encouraging phrases she would say to me. My Mom was the "boss"...although Dad wouldn't agree with this! I miss her very much. Thank you for reminding me of the words she used to say to me. And thank you for your advise. It sure helps to feel that others understand. Take care

Dianne

 

[cris]

Glad that I could be of some help. We are all lost at the beginnig.. unfortunately e all have to learn on a very fast scale. Have you joined your locale ALS Assoc.? They can be a big help..loaning equip from the loaner closet among things..the support too.

One thing occured to me after I replied the 1st time...your sisters may be scared and are taking their fear out on the easiest target..you..it's always easier to be angry at someone and blame anyone for our misery.

As before will keep you and yours in my prayers

 

[silasbaby]

Hi Dianne:

Sorry to hear about your fathers diagnosed of ALS. My husband Mike is the ALS patient. Mike started having problems with his balance in 2007 and was mis diagnosed as Parkinsons. We rec. the ALS diagnosed in the fall of 2008. Mike also started having problems clearing his throat and trouble trying to cough.we did get the cough assist. It is well worth checking into.

Sounds like you have a great dad. My dad was the same- loving, kind, very supportive of us and would have done anything for his girls. My dad was diagnosed with pancreatic cancer in 2005 and we lost him in 2006. During his illness he would never tell us that he felt bad but we could tell when those bad days were. He did not want to worry us. I to was the oldest of 3 girls. I was always the peacemaker and he always called me "Mother Hen". Prior to him being sick of course none of us had ever been in the caregiver mode for a family member. 2 of my sisters are medical field and I have no medical experience.
It is so sad that when illness hits a family it can pull out the worst in other family members. We dealt with this while our dad was sick. It was not us 3 girls into it, but my dads brothers and sisters (13 of them). They tried running the show and were even going against what our dad wanted. The emotional ups and downs, the worrying, trying to do the right thing in regards to our loved one's illness is so overwhelming. Very long story to go into but it consisted of real estate, bee business that dad had.

Hang in there ! When we are dealing with a loved one's illness sometimes in the heat of the moment things are said and emotions are flying. My 2 sisters and I have also had our moments but we always came back together.
I wanted to let you know that we also have been in a similar circumstance with family and we made it.

Julie

 

[Why my Dad]

Thank you so much both of you! I want to cry but my Dad would see me so I will save it for when I get in the tub... I am so hoping my sisters think about the way they are behaving as it is having a great affect on my Dad as well. All he ever had to do was give us a "talk" and his girls would do anything for our Dad...even if it was only to get along. Now - Dad is more feeble, but he isn't stupid. He forgets things and he gets confused sometimes but he is very stubborn and he is adamant about making his own decisions. Because my sisters don't spend much time with him - they don't know his habits as I do. You may be right in saying that they need someone to take it out on as they are hurting. Myself - I think that both of them have some guilt feelings - or maybe jealousy..because I am here with Dad and they can't be - for their own reasons. As I said - one sister lives 4 hours away and her family lives close by her. They both have to work as well but they don't understand that I too need an income. The other sister who lives 5 minutes away...she was the same way when my mother was sick and I think it is because she can't face that we are going to lose our Dad.

I looked online and the support group in Niagara is inactive right now. I really don't go too far right now as I don't like to leave Dad. I do have a common-law spouse that lives with us as well and he has been wonderful to both of my parents (and my brother). He helps to lift Dad but there is only so much Dad will allow him to do. My daughter lives in Barrie and she is a registered nurse. She works in-home care and has asked if she can be transferred to Niagara Falls when I am unable to take care of Dad on my own so that she can help and still work. I just don't know when that will be as I don't know what to expect. Dad seems to have given up when he received the diagnosis and it seems that, as each week goes by, he loses more strength. I don't know what to think.

I thought it was funny when Julie said that her father called her the Mother Hen. My mom used to say the same about me as I was always looking out for my younger sisters. Last Mother's Day - my Dad asked my boyfriend to pick up flowers for me as he says I am always "mothering" him. Poor Dad...it is such a blow to his whole being. He has always been so proud and it must be so humiliating for him to need my help with personal care. I try to joke with him...and I remind him how my Mom used to say "you'd never make a nurse!" as I am so worried that they are getting cold when I help to shower them - I guess I'm too rough. I try to keep him covered so that he still has some dignity but I know how hard it must be for him to lose control of his life. Thank you so much for listening...and for your encouragement, understanding and especially your prayers. After writing all of this - I realize more than ever that this isn't about me and my feelings...I have to use the energy I have to do the best I can for my Dad. Thank you so very much! Take care,
Dianne

 

[lynns]

My name is Lynn I am going through the same thing please email me..My address is [email protected]. I would love to talk with u and we both can vent..Please don't let them get to u..I know it is hard it gets to me too, It's hurtful..Only a special person a strong person could be doing what u are now. I know the sleepless nights and worrying when u need their support..Anytime u want to talk to me I will always be here for u to talk with.. Good Luck and God will Bless u and everything will be alright..Oh and there is a cough assist machine u will have to get it from a lung specialist will help him cough..And there is a vest that shakes him and loosens up the mucous..Hope to hear from u/.