Separated

My husband and I don’t live together.  

We’re not divorced.   We’re not mad at each other.  He is not traveling out of state.  My husband has Alzheimer’s Disease.  He is now living in a lock-down care facility at the Veterans Home.

Having him go into a care center was one of the most difficult decisions I’ve ever had to make.  The VA called saying they had an available bed.  Knowing how difficult it is to get into this facility, I had put my husband’s name on the list two years ago.  Still, I wasn’t prepared for the call.  

After discussing it with our children, his siblings, and my siblings, we were  all 100% on board of having him go.  I’m thankful for that.  If he was capable of making decisions, we all feel my husband would agree the Veterans Home is the best place for him to be, now.

But it’s still hard - very very hard - for us to be living apart.  When I ask the workers how he is doing, they say he is not sleeping at night.  Well imagine that.  I’m not either.  

Some well meaning friends and acquaintances tell me, “The Veterans home will give him better care than you were able to give him at home.”

My rebellious self thinks, it’s a great place, but better than ME? 

Do they know that I can tell exactly when he is hungry and when he needs to go to the bathroom?

Do they know I have it down to a science how to help him get dressed in the morning and (sometimes) undressed at night?

Do they know that the day before he went into the VA Home, we were in the mountains walking along a stream, holding hands, which we have been doing almost every day this summer?  

Do they know we snuggled on our couch practically every night watching clean mushy Hallmark movies?  

Hmmm.  But perhaps, on the other hand,  they know  that showers were becoming a disaster.   Maybe they know that I sometimes had to cut my husband out of his clothes, because that was the only way I could figure out how to get them off.

Perhaps they know, as well as I do, that things are getting tough, and would soon become more than I can handle.  

At night, I am lonely - very very lonely.  We’ve been married 50 years.  We celebrated our anniversary five days before he entered the VA home.  I grieve not having him next to me.

When I wake up, my first thought is Bob.

After I get my chores done, I take a 15 minute drive to visit him.  He’s shaved and dressed and sitting contently in the common room with the other guys.  

We go upstairs for little walks in the courtyard.  We watch the tortoise eat strawberries.   We sing, “Let Me Call You Sweetheart” and “Down by the Old Millstream”.  I ask him what his name is, and he usually doesn’t know.  When we go back inside, Lulu, the baby kangaroo is often there, jumping down the corridor in diapers. 

We take the elevator back down to the Alzheimer’s Unit.  On our way down, we hug and kiss. I tell him, “I love you.”  Before the elevator door opens, I wait for him to tell me he loves me, too.  On good days, he does.   

5 Secrets

5 Secrets

Here are 5 secrets that keep me going as a caregiver.   My husband has Alzheimer’s Disease and lives at home.

1.  Meds:  In the latter stages of Alzheimer’s disease, many Alzheimer’s patients become agitated and aggressive.  They also  experience changes in sleep patterns.  Thank you, Dr. P for prescribing Haloperidol in the morning, and 200 mg  of Seroquel  at night.  Otherwise we might be having punching fights by day (This didn’t happen, but it could have) and we would be knocking on doors in the dark at 4 A.M. (This did happen.)  I would not be able to handle my husband at home, if it were not for these two medications.

2.  Food, Exercise, Sleep:  It’s important for me to enjoy good health so I can take care of my husband.  Many caregivers end up dying before their loved one, due to stress and poor health caused by caregiving.  I try to eat healthy, thanks to the book Eat to Live by Joel Fuhrman.  It’s saving my life, I hope!  My husband and I  walk outside or at the mall daily.  It’s good for both of us.  We both sleep through the night now, thanks to the meds.  When my husband was waking up every hour at night, I was a zombie. 

3.  Support Groups:  I go to two.  It’s extremely therapeutic to share what I’m going through with those who understand.  In the groups, we can tell funny stories about our loved ones without people thinking we are making fun of them, or thinking that we are taking the disease too lightly.  We need to laugh, because it is such a horrific disease.  We also receive important information on all aspects of the disease.

4.  Outside Help:   Our daughter and my brother each take care of my husband one day every week.  Other family members, including his siblings, our children (including spouses), grandchildren,and my siblings, are also great to help out.  I haven’t been able to leave him home alone for the past four years.  I love having a break.  Everyone isn’t blessed to have a supportive family close by.    There are places, like Neighborhood House, where patients can spend the day doing activities, while caregivers have some time off.  The Alzheimer’s Association is a great resource for help. 

5.  Me Time:  To keep myself pulled together and sane during this challenging time, I try to do something fun every day.  For me, it’s quiet little things like reading, writing, quilting, knitting, crocheting, gazing at the stars in our hammock…  For others, it might be tennis, soccer, golf, drawing, painting…