Caregiving

[Markbreton]

cherie

My wife went way overboard this Christmas with gifts for our children...6 of them ranging from 26 to 17. I suspect she did this thinking it will be her last one. LOL She did the same thing last year. With god's help and hopefully new medicines she will be here for a few more enjoyable Christmas's.
mark

 

[Markbreton]

Constant care

I hope people do not think I am cold or uncaring but I spend many hours worring how I will care for my wife. She is 51 and I'm 54. We still have children in University and there is no way I can quit my job to provide constant care for my wife....we are definitely not at that stage yet but it's making me sick wondering how we will take care of her. I love he so much and I want to do everything I can for her but leaving work is not an option. I'm totally lost on what to do.
Mark

 

[cherie]

wondering whats next

Hi Mark:
I hear you about the worries about money,I have the same worry I mean I will be honored to take care of my spouse,its just I dont know how I will survive money wise either he is still working right now but that has slowed down alot,its only natural I think about these kinds of things.I have a thousand questions right off the bat,but I know I can only deal with one day at a time,and worry about the present moment and face each challlenge as they present themselves..It sounds like your wife really enjoys the children and wanted to give them a nice christmas..Its got to be hard not knowing whats next for her...

 

[Al]

Hi Mark. Has your wife applied for Canada Disability Pension? CCAC can help with care as well as the Red Cross. Have you registered with the ALS Society of Ont.? They can help explain your options as well.
AL.

 

[JACKIEMAX]

a place to vent

hello to new members as well as us oldies,

my husband has had als, the limb onset kind, for two years now, and has declined rapidly the past couple of months. he is on his bi-pap almost constantly now, and is in a hosp. bed in the den most of the time also. he can still eat by himself, but is noticing a difficulty in swallowing, so we are glad the feeding tube has already been inserted for when it was needed.

my heart actually breaks in two as he hobbles on a walker with me behind him steadying him to the bathroom and back. he is going to start using an external cathetar tonight and i hope it works for him.

i have to go to the bathroom with him every trip as he cannot 'clean himself' anymore. i have asked his and my family to shorten their visits, and his family have given me hell for it. i am only trying to make his last weeks or maybe days more peaceful.

friends, please pray for us - for peace and comfort.

thank you all. jackiemax

 

[CindyM]

We do pray for peace and comfort for you both, Jackie. Cordially, Cindy

 

[C.F.]

Thanks To All

It is bittersweet to read all the replies of encouragement and support. Hugs to all of you. This is the worst thing to have to endure, watching, waiting, helping, and feeling helpless. Wondering how long it will go on is so hard, and wanting to help our loved ones not suffer......
Love and Peace, CF

 

[Gina]

Hi Cherie,welcome to this wonderfull loving forum,sorry however that you have to be here!This situation and so recent diagonosis must still have you in shock.My husband was diagnosed 4 +yrs ago so i guess we have had time to ajust to the reality of the situation.It definately is not an easy road to travel and in fact at times is can be somewhat overwhelming.!You will need time to ajust to the diagnosed and let yourself grieve the loss of your future dreams together.Your husband is so young!MY husband and i had to sell our house also because of the stairs and i wanted to be prepared for the future as well.I wish that they were some way that i could help you !I hope it helps to know that thier are so many wonderfull people on here that will be here for you every step of the way!...............prayers and hugs your way ....Gina

 

[cherie]

thank you gina

Hi Gina; yeah thats what were facing is moving out of this house because of the stairs,my husband is so young and we had all these plans and now this it was a blow I mean we never expected this at all,well no one does expect this,I get so fearfull I dont know what to do,I know its going to be a rough road and I pray to god everyday for the strength to keep going,Our daughters moved out today we figured it would be easier on us and them if they didnt have to go through this on a daily basis..We still have our youngest daughter here she is 18 yrs old with a two yr old daughter she asked me if I wanted her to stay,I dont know what to say to her I want her here but the baby it will be hard for her I think because she loves her grandpa so much and she is used to him picking her up and swinging her in his arms,and he can still pick her up but not as much as she would like.I think for awhile she was mad at him because he wasnt paying as much attention to her,well only becuase we going through all these tests and the stress and stuff like that.There seems to be so much to think about all the time,for now we are taking it day by day because he can still walk,its just really slow.I am glad to have met you here as well Gina its unfortunate we had to meet under such hard times..I am so greatful to have site to vent and cry and share stories.God Bless Gina thank you for sharing with me.. cherie

 

[CindyM]

Hi Cherrie- speaking as a grandma all I can say is that little ones bring a lot of joy into the house and they are so adaptable. Grampa may possible find new ways to play with your granddaughter and her little life will be enriched as well. I wonder if either of our Al's would agree? I think MT lives with grandchildren (?) and I think some of Al's grandkids are nearby, if not in the same house.

Please do a little research before you have your daughter and grand daughter move out. For that matter, the day may come when, as primary caregiver, you might need the help of your other adult children. JMO. Each family has to find their own way in this...Cindy

 

[cherie]

grandchildren

Hi Cindy,yeah I was wondering that to if our grand daughter would actully be a brightness in our world,she really loves her grandpa,when our little grandson was born nov 30th she looked at the baby and said ''my grandpa'' lol so they are close.I really appreciate the feed back..My daughter the one that still lives with us is stuying to be a nurse she is in her first yr,so yeah could be helpful to us..

 

[CindyM]

My thought, too. You daughter will get experience that most nurses and docs do not have, and it couldn't hurt a PAL to live with a nurse in the household! :-D

 

[APC]

Scared

Hi, I have been reading many of your posts and encouragement to others. Tonight as I read I'm sooo scared. My husband was diagnosed w/ PLS formally in Sept. I see him declining with his muscle strength and shrinking muscles. We love each other dearly and I plan on taking care of him and being there for all of his needs as possible. What scares me the most is watching him decline.Seeing the frustration in his eyes and the look of despair when he can't button his pants or pull up his zipper. I do have a great friend whom I can talk with,but all people have problems. I do have a strong faith in God, and Jesus is my Lord and Savior. But, sometimes I feel like I'm gettin hit from all directions. I have work friends that say I'm so strong,but while I'm standing there I want to get my husband and run away. I know running away is not an answer. Just venting. Thanks for listening. APC

 

[cherie]

scared

Hi I am sorry to hear about your husband,I know its the hardest thing to sit back and not be able to do anything for the first two months of testing I wasnt able to sleep or wasnt eating right it was horrid..I have fianlly got to a point where I can get some rest..I will be here if you ever want to vent..God Bless
cherie

 

[CindyM]

I do not see how we cannot be scared at times. The possibility of becoming totally dependant upon another scares the dickens out of me, as did the possibility of having to take care of someone who is totally dependant 24-7. It is good that your co-workers see you as being strong - that's valuable feedback on the abilities that you do have. But you also need to vent. That's why we are here! Cindy