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JennyC

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Joined
May 3, 2016
Messages
232
Reason
Loved one DX
Diagnosis
04/2016
Country
US
State
NY
City
Queensbury
Update on my mom, she continues to decline quickly. She is now exclusively in a wheelchair as she can no longer use the rollator. She has a home health aid that comes in two times a week for two hours in the mornings but home health aids are expensive. My mom doesn't qualify for palliative or hospice care yet which is amazing to me. Her pulmonary numbers disqualify her right now. So its a family scramble to try to care for her. The Aunt that she lives with is going back on the road for work next week and will be gone Tuesday through Friday. My Uncle will be there other than for a short time very early morning and a few hours in the afternoon as he is a school bus driver. He will retire in January which is good but mom still won't let him help with toileting, bathing and such which is understandable but still really difficult.

At this point we use a pivot transfer disc to get her from chair to chari or toilet and we have a rolling shower chair. I also got her a beasy board but we haven't used it yet.

She and my Aunt caught a cold so i can't go down there this week, I have a compromised immune system and I have brain surgery (nothing big, just a shunt) on Thursday so I can't get sick, I won't be able to help with her other than cooking and such for at least 3 weeks which puts stress on the rest of the family.

Her speech is pretty bad now and its very difficult to understand her, I'm trying to talk her into some sort of communication device or word board, at least just to have handy for when we can't figure out what she is saying.

Her mood is pretty good though, they have her on two antidepressants now.

Wow I have to stop writing as I am writing a whole book! I'm sorry I haven't been around more to be of more support to others.
 

JennyC

Distinguished member
Joined
May 3, 2016
Messages
232
Reason
Loved one DX
Diagnosis
04/2016
Country
US
State
NY
City
Queensbury
Everchanging

I hate this disease so freaking much. I've been taking care of mom two days and one over night a week...to those that do it full time I have no idea how you do it, I know you probably don't have any other choice but wow, even if my body were healthy I'm not sure how long I could do it before a complete breakdown.

We had gotten into our routine and were at a point where it was a mixture of caregiving and lots of laughing, I would go up to bed without feel like I was going to fall apart emotionally. Then I came down two days after I had left just to drop something off and she was in a wheelchair and speech was so bad, right hand is now going, she is starting to choke , has a hard time taking her pills.....and it hits me all over again, my mom is going to die and probably sooner rather than later which I want for her because she is so unhappy....but soon I will be a part of the group that talks about how their moms were when they were alive, who has no mom to call when she needs advice.....the club no one ever wants to join..

I thought I was passed this part of the grief where it feels like someone is literally trying to take my heart out and I would gladly let them to be free of this pain....but I realize you are never free of it, it just comes in cycles....and I think it probably will for the rest of my life...maybe much longer in between good times and feeling like this but I think my heart will always be torn apart, held together by a few lopsided , loose stitches
 

scaredwifetx

Forum Supporter
Very helpful member
Joined
Jul 25, 2015
Messages
1,573
Reason
CALS
Diagnosis
07/2015
Country
US
State
tx
City
Dallas
Oh Jenny...we all so hate this horrible disease. I was just sitting here by myself and in despair. Steve is now very close to getting in the wheelchair full time and his progression has rapidly sped up. The CALS grief and anger comes in waves as we watch them dealing with the monster. I am so glad your mother has such a wonderful daughter there for her.

I has been eight months since my mother died and it there are still times where I grieve but it is starting to get a little easier. I was with her in the end and she was very ready to go. You will always miss her and your heart will tear but she will be with you always. She has done a wonderful job guiding you and I am sure that she will always be your guide in spirit.

I know that I hate watching Steve progress but know that I will have to let him go when its time. Losing them is so very hard but at some point in this f^&*(&*^ disease its time to set them free.

My thoughts and prayers are with you over the next few weeks and I hope your surgery goes well and you are able to take the time to recover. Big hugs!
 

Erika

Distinguished member
Joined
Sep 21, 2016
Messages
175
Reason
CALS
Diagnosis
06/2016
Country
US
State
Arizona
City
Mesa
Hi Jenny,
My mom was diagnosed this past June. Like you I find my self going through incredible times of strength and then out of nowhere, bam! It hits me. It hits me hard and in the most simple of her actions. Like watching her take a sip of her coffee as she now cups her mug with both hands. Or struggling to finish a sentence without running out of breath or having to clear her throat multiple times. I think of the way we could talk for hours about everything and anything. I remember my son saying she's a Spanish speaking Eminem because she'd talk so fast. Now we can't have a conversation that lasts more than ten minutes because she's too winded and fatigued to continue. I understand that grief of loosing parts of her day by day.

I haven't had the chance (or maybe the ability to without feeling seek to my stomach) to post much, but I do come by and read yours and others CALS' posts. I feel strengthened every time. So while I don't have the experience and wisdom so many of these great CALS do, I hope you'll know I'm thinking of you hoping the weeks to come are days of quick healing for you after surgery, strength and moments with your mom that will serve as beautiful memories to come. :)

-Erika
 

vltsra

Distinguished member
Joined
Nov 12, 2015
Messages
415
Reason
CALS
Diagnosis
11/2015
Country
US
State
CA
City
San Diego
Re: Everchanging

Dear Jenny, I'm so sorry to hear that your mom is progressing so rapidly. The hardest part for CALS is to watch those we love suffer and not be able to help them. Your mom is lucky to have you there with her. I will be keeping you both in my prayers.

V
 

SheilaZ

Active member
Joined
Jan 24, 2016
Messages
51
Reason
Lost a loved one
Diagnosis
01/2016
Country
US
State
West Virginia
City
111111
So very sorry....praying for you all!!!
 

Narrowminded

Extremely helpful member
Joined
Apr 30, 2016
Messages
2,608
Reason
Lost a loved one
Diagnosis
07/2007
Country
US
State
PA
City
Pittsburgh
Hi Jenny,

Please know you are in my thoughts and prayers. This disease S*cKs big time. There is nothing good about it. Praying you have proper time to recover from your own surgery. I know not long after DH was dx, I had to have a hyster. I was a mess. He was still able to care for me as he was just limping, but I was so very worried. Praying your family is able to cover as well.

Hugs,

Sue
 
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