Feeling alone and missing people.

lisarae

During this journey I am finding how alone I feel; not being able to talk to real people.  I love our care team of doctors, but everyone teases me because I used to be a social butterfly and now I am so isolated.  I am taking care of my husband and he has had some infections happen as well as the doctors are telling us that things are changing and advancing.  We were told the other day to let him eat whatever he wants and that call them as things come up if we need their help.  They will recheck him in September to see if he is ready for hospice.  Our family is either one of two directions in their actions and behaviors.  They either have no communication with us because they are not sure what to say, do or how to act.  Or the other side wanting to know what they will be getting left to them.  My husband is at a point where he only wants me to be there for him and be the only one that is to do things for him.  I am ok with that.  I get tired and some times have to take a deep breathe and remember that this illness is one of the things that is changing him.  The hard part is feeling alone.  I try to craft with no real interest, my garden is looking a bit sad, I am always doing the never ending trying to clean and organize the house and I do have my faith that I try to hold on to.  I guess that I am just wanting to know how others are coping and adjusting to this new normal part of our lives.  Thanks.

M1

Lisa, you don't have to wait for the docs to ask for a hospice evaluation.  Sounds like you could really use the support--why don't you call yourself?  You don't need an MD referral.  I can't imagine a month is going to make much difference in your situation, and it sure sounds like you could use the support.  In fact depending on your area, you may want an evaluation from more than one agency.   All it takes is a phone call.

rockfarmerswife

lisarae, I know exactly how you feel.  Does your LO let you at least attend services?  Sometimes that 2 hours,  plus my 1 hour each work day commute,  is the only time I'm not "on duty".  One of my best friends (from the past) messaged and wanted to get together, but I never know what kind of reception I'll get to that request.  My very BFF moved away, which is a blessing because she doesn't have to see all this, but I sure miss her. I'll pray that you can find some peace in your faith and strength for the journey.

abc123

Dear Lisa, I read your profile. I’m very sorry that he has such a serious and sad diagnosis. I am truly sorry for both of you and the people who love you both. You can learn a lot here just by reading the post by others here who are currently living this nightmare day to day. Then we have the others who have already fought the good fight and finished the course with their own loved one. They stick around and continue to bless us with their stories and their experiences and knowledge. We are a family and we support each other the best we can. We welcome you to this family that we have built together thru thick and thin. 

In regards to the people who are concerned about what they will get, please make certain YOU are protected financially. Have you seen a CELA? At this point in my journey helping my dad care for himself and my momma (she has Alz) , if my brother and/or sister show up and ask about an inheritance, I might just lose it. This is a very lonely journey and no one understands it unless they have experienced it. I wish you well and I wish you peace.