Just need to release some emotion

[BlessedDaughter]

The past few days have been somewhat downer days for me and so I write today just to vent a little.

My father who was diagnosed in June seems to be getting worse. He has bulbar onset and has been using a BiPAP at night now for about a month. We till can't get a dang mask that fits well, so the one that he uses makes big sores on the bridge of his nose.

Shortly after the diagnosed, made up my mind I had to be the rock for my family. So I have done the best I can setting up doctor appointments, etc. Until lately, I have been pretty strong and not too emotional. But lately we have had so much going on, I hit a down time, which I know will happen.

My mother also had knee replacement surgery last week, so she is still recovering. They live within 5 miles from me, so it is close, but yet as a single mom with two young ones and a job, I can't spend as much time as I would like with them.

We just moved them from a two level condo to a one level place and I just wish I could help more to unpack. I try to tell my Dad, we will get it done little by little. But he is adament about parking the car in the garage, so he works in the garage trying to move boxes around, etc. However it does make me feel good that he does not hesitate to let me help him when I'm there.

Also dealing with the kids, my 2 year old gets early intervention services which is time consuming, my soon to be 1st grader is special needs with sensory processing disorder so she just needs constant supervision. It's a lot - but I'm truly blessed that God gave me these two girls to raise (both adopted).

He seems to have more trouble eating and cannot breath well in an environment with no fresh air (has to roll down windows in car sometimes even if A/C on). His right leg is getting weaker, his had strength is getting worse and his talking now is virtually gone. To me it seems as if he has progressed so fast. He told me this weekend that b/c of what is happening to him, he does not want to live. He is ready to meet God.
He and I both cried and I did tell him I understand. He said he does not want to live if he becomes refined to a wheelchair. We both agreed though that we have to accept God's timing and we both know that God will make him well (either through a miracle on earth or by bringing him home).

It just hurts so much now, again I've been fairly strong until lately and just feel suc a deep hurt when I'm alone - I hate what this disease is doing to my wonderful father - I hate that he has to experience this. I hate that this is not slowly progressing. I hate that there is no cure. Yes, I have no choice to accept it, but doesn't mean I have to like it. I just let him know how much I love him and no matter what this disease is doing to him, it doesn't change who is really is.

I know most of you experience the same feelings, so this is not unique or special, but this is exactly why I chose to vent here today, because you "get it".

Thanks so much cyber friends and praise God we have this forum for each other.
B

 

[Debbie54]

Amen, to that. I am sorry to hear about your father. My husband just found out 3 months that is has ALS. He has the same thing with the voice and eating. So I know what you are going throug. It is hard to be strong but I am trying really hard. My husband is in good spirits,so that help. I will be praying for you and everyone here that is going through this also. God Bless you all!Debbie

 

[wendy]

It is really hard to be strong sometimes and sometimes it is OK to cry. My prayers go out to you because I know how you are feeling your Dad sounds a lot like mine. My thoughts and prayers are with you & your family. I also have a son in the first grade and where ever I feel sad I look at his beautiful smile and it always picks me up.

God Bless,
Wendy

 

[carma]

I too understand everything you are feeling; feel free to vent, better to let it out than to keep it pent up inside you. In regards to the Bi-pap mask, my m-i-l had the same problem with the bridge of her nose; its basically a pressure sore. Ask for a full face mask, it took her awhile to get use to but her nose feels a whole lot better. Hope this helps, Carma.

 

[califsand]

It is very hard to be the rock for the family, the pressure builds and the feelings can become overwhelming at times, especially when you are alone and nobody is watching and taking their cue from you. This is an excellent place to vent because we all do understand and nobody will ever judge you here for your feelings, no matter what they are. There is an enormous strength in those of us who have taken on the responsibility of being there for our families during this, we are the glue and glue (us caregivers) needs to stick together!

You have your hands full with your job, your children and your parents! Now is the time to take one day at a time. It may be the most difficult time of your life and it's okay to fall apart sometimes. Falling apart is something I am sure that most of us do not see as an option. I know that I'm afraid to cry because I feel if I start that I won't be able to stop... and then what happens to those that depend on me to be strong? I think many of us have that type of mindset here. Fortunately this is a place where you can lean on others sometimes, when you feel overwhelmed, come here, you'll find love & support for your role in what is happening and maybe it will help you to feel less like the world is resting on your shoulders.

Take care,

Sandy

 

[BlessedDaughter]

Thank you for your replies.

Debbie, I'm glad your hubby is in good spirits. My father was until recently - but I have hope he'll find his humor again.

thanks for the prayers Wendy, we could not have dealt with this without prayer.

Carma, thanks for the tip, but he is using the full face mask.

Sandy, thanks for your understanding. I know what you mean about if you start crying you are afraid you may not be able to stop. I think for me, my bouts of sobbing also provide a release. But I haven't done that in a while, I've cried when alone, but know there can be more to be released.

Girls, your words and prayers mean a lot.
Thank you very much!
Bette

 

[anneinma]

I am so sorry for your situation. When my dear husband began using the B Pap all night some things improved. He used KY jelly to help with the discomfort from the mask.

I have said to many on here that I wish I lived closer so I could help. My DH passed away in April. I miss him dreadfully and understand what all of you agonize over every day.

 

[Debbie53]

walking around numb, overwhelmed

Hello out there. My dad was diagnosed with PMA a couple of weeks ago... before that, they'd thought it was peripheral neuropathy. We lost my mom to lung disease the month before, and now this. He was a great track athlete up until 3 years ago (he's 87) and now he's lost over 50 pounds just this year...he's skin and bones and can only walk a few feet. He can't write, can barely hold his silverware, and can't uncramp his hands. His once booming voice is creaky and weak, and I just want to cry buckets...but to who? He's got a great perspective and insists that he's had a very lucky life, and has nothing to kick about - but it's so hard to watch! My brother has his own health issues and can't/won't (?) really hold up his end. I do think he could stay in better communication and visit more. I have fibromyalgia myself and can't help physically much but I try to visit almost every day. HELP!

 

[brooksea]

Hi Debbie,

Sorry about your father (and your mom too!). Has he registered with the ALS Association and the MDA? They can be very helpful and I'm sure would make things a little easer after assessing his situation.

You'll find lots of info from others on this site.

 

[CindyM]

Hi Debbie- welcome to the forum. I am sorry to hear about your Dad's progression. It must be hard on top of your Mom's passing. You landed in a good spot on the internet, though. Folks around here are caring and helpful. Cindy

 

[JACKIEMAX]

Note To Blessed Daugher

I Think I Speak For Many, Many Others In This Forum In Saying That Almost
Every Single Post We Read On Here Hits Home In Some Way For Us..... My
Husband Does Not Have Bulbar, He Has Limb Onset, But Is On His Bipap 24/7 And Would Die In 30 Min. Without It. He, Too, Has A Pressure Point Sore On His
Nose, But It Is Not A Bad Fit, It Is The Pressure Pushed Against The Bridge Of
The Nose In Order For No Air To Seep Out. If It Is Too Loose, It 'honks' And Makes Awful Noises, And You Know They Are Not Getting Enough Air.

I Use 'duo Derm' Patches. I Get Mine From Hospice. They Stick To The Skin'where The Sore Is, And There Is Medication On It. They Should Be'but To Fit Just The Red Part, And Stay On About 5 Days, Then Take Off And Replaced.

They Are Thick And Help Immensely. If You Don't Have Hospice, Ask Your
Pharmacist About Them Or A Medical Supply Company In Your Town.

We Are All In The Same Boat One Way Or Another, So We'll Just All Paddle The
Oars And Help Each Other. Jackiemax