My turn to be overwhelmed

Katie C · 11-10-2009, 11:50 PM

So, regarding the past few weeks. We came back from our Disney vacation (which was awesome) and Glen tried to return to work. He was back one day and came home so exhausted that as a family we decided that it was time for disability. Few days later, my mom goes to the emergency room with breathing difficulties.. fairly normal because she suffered from asthma and emphysema. X-rays show a large, inoperable mass. She opts for no chemo or radiation, a decision we support due to her other health issues. The doctors say she should have 3 - maybe 6 months. She is able to go back to her assisted living apartment, with 24 hour hospice nursing. After a few days, it becomes apparent she is deteriorating rapidly. Hospice asks that a family member be there at all times. We take turns... and sometimes my sister, niece, sister in law, and/or myself stay in groups for slumber parties. Mom passed away November 1, and her funeral was last Friday.

Today, Glen went out for his run/walk and was gone more than an hour for a route that normally takes him 45 minutes. I was about to go looking for him when he came home. When asked why it took so long, he told me he was looking for a young friend from church at the park. No.. he had no reason to believe she'd be at the park but apparently spent quite a bit of time looking for her. So for now, he's promised only to go in the morning (when his head is clearer) and to just go out and back with no stops in the park. I'm afraid the time is coming when I can't let him go ... another hit to his independence. ALS sucks. FTD sucks. ALS - FTD together is just not fair.

Gonna curl up under my blankets and not come about for about a year. Sigh.

DebbieR · 11-11-2009, 10:42 AM

I am so glad you had a great trip to Disneyland!! But WOW you were hit with a lot when you got back. Look after yourself the best you can. Curling up under your blanket for a day or two sounds kinda nice. (maybe not a whole year)

Thinking of you.

joelc · 11-11-2009, 11:29 AM

I am sorry for what you are facing and have already been through. Try to take care of yourself.

BarryG · 11-11-2009, 11:30 AM

Katie, I am glad that you had a good time in Disneyland, holidays are so important. I am also very sorry to hear about all that you have been and are going through with your mom and Glen. Please take care of yourself while you are taking care of Glen. Maybe you need to go with him on his walks? I know it is hard to lose your independence, I have no cognitive problems but even so, I hate to think of not being physically able to go where and when I want by myself. I hope that today is a better day for you and that you can come out from under the blankets.

shelleynshaggy · 11-11-2009, 11:48 AM

Katie - I am always here for you - thank God for the internet!!

KeeKer · 11-11-2009, 02:37 PM

Sorry to hear about all the crap you had thrown at you lately! At least you had a great trip and will have wonderful memories of it. Take care of yourself too.
Colleen

asantiago · 11-11-2009, 04:19 PM

I'm so sorry you are going through so much. People always told me God only gives us what we can handle. All I could think in response is I don't think so, I've determined that God really hates me. When it rains it pours and bad things always seem to cluster I don't know why. I like to think it's so the good times just seem that much sweeter and they will come again for you.

Everytime I read posts where PALS and CALS are feeling overwhelmed I wish I lived closer and could come help because I very clearly remember how one feels when you reach that point. Unfortunately, all I can offer you is a virtual hug!!! So here it is ***BIG HUGS!!!!!!!***

Zaphoon · 11-11-2009, 09:46 PM

Katie,

Thanks for updating us! You have a very engrossing style of writing - no words are lost! You sure have had a lot thrown at you lately and I don't blame you for staying under the blanket for as long as you please.

I cannot imagine what it would be like to see my spouse being hit with both ALS and FTD. May you find rest under the blankets!

Zaphoon

Jeannie · 11-11-2009, 10:00 PM

I am sorry for the loss of your mom, and what you are dealing with Glenn. You are in my thoughts and prayers
In friendship
Jeannie

tdamess · 11-11-2009, 10:16 PM

i am so sorry for the loss of your mom that is hard enough in it self . i hate this als disease also i am relived it does not have to be deadly but, not so sure my son will agree to this, i just found out he is not taking any of his meds .and i am very disappointed....i hope thing ease up on you and glen

Katie C · 11-13-2009, 03:02 PM

Was talking to a friend of mine... Jesuit priest who happens to also be a therapist... I said he needed to be clear on the fact that I'm really not very happy with God right now. He laughed and said he was pretty sure he AND God were ok with that.

hopeful warrior · 11-14-2009, 07:14 PM

Katie, I just want to reach out and hug you. I am so sorry about this vicious cycle of heartbreak you've had. I just breaks my heart over again.
I am so relieved you shared the message from your friend. I am comforted to hear God knows I'm not real understanding about this ALS situation. My God, this is HARD.

Shelley, I agree. I am so thankful for the internet and this sight. If it weren't for you all, I would have no human contact with someone else going through this. I am so sorry for all of us, our PALS, and our families.

indigosd · 11-15-2009, 06:12 AM

Katie, it is DEFINATELY time for a SLUMBER party! Bring your best loved jammies, brightest nail polish, favorite ice cream and drink of choice! We will just have a girls night :] [well...I guess we could invite GlennBrittle, Peter AND the entire Forum Follies Folks just to keep us laughing with their twisted sense of humour!] We can watch our favorite movies, plot the next chapter or the Follies, dance until we are dizzy, paint our nails and do facials while we are eating ice cream and take turns mixing the drinks! Your place or mine? Sending you hugs and an endless supply of Pixie dust!