Saturday, March 17, 2012

A New Normal

This is what I have been telling people we are trying to accomplish. For 11 years, we devoted almost every minute to caring for Mike, now that he is gone, there is such a huge void in our lives. Even though Mike didn't speak for 7 years, his "voice" was loud and he not having him in the house has created a silence we were not expecting. He made us smile, he inspired us, he helped us get through the day. His strength kept US strong.
My day feels empty. I am now beginning to fully understand all that I did for Mike. Without having these things to do, I feel like I'm not doing anything. I feel like I should be doing SOMETHING. For starters, I'm trying to get the house back in order. It will take time, since it wasn't overnight that it got to the condition it is now. In the room where Mike and I slept, I've already started changing things around to make it more comfortable for me. It's been a difficult thing to do emotionally, since I don't ever want to "get rid of Mike" (as Courtney has suggested). I just want to enter a few phase and make it more mine. With all the equipment (hospital bed, hoyer, Geri Chair, oxygen) out of the house, I realize the walls could use painting, which I hope to begin doing next week. It will fill in some of the empty hours and also make things look better.
I guess the reality is this - I thought 11 years would help us better prepare for Mike's passing. It did not.
I've also been dealing with the after effects with regard to finances. Mike had been on social security disability for 10 years. While I knew that I wouldn't get the full amount he had gotten, I thought I would get something. I was wrong. I'm not entitled to widow's benefits until I'm 60 years old. At that time I can then I can call back and request Mike's benefits. I did receive a "lump sum settlement of $255.00" to put towards Mike's funeral expenses. I also received notification today from social security. They want me to RETURN Mike's February payment (even though he got it when he was very much alive) because he's NOT ENTITLED to payment for the month he died (even though he passed away on the last day of the month). I can appeal this decision if I can show that I needed this money to "survive", but how sad that I have to do that. There's something terribly wrong with the system.
On a different note, we continue to be surrounded by family and friends as we navigate our way to a new normal. We are trying to get out all the Thank-You's (over 200 to do) from so many people who have reached out to us during that time. It was also no surprise how many people's lives Mike touched and that alone will always comfort the children and I.
Last night Courtney and I decided to go to the movies at 7:30 p.m. (Brandon was out with his friends) which is something we were never able to do. It felt really odd to be out at the time when the kids and I had to help get Mike in bed.
And so begins our "new normal".


L.S.Fisher said...


My heart is with you during this difficult time.

Many blessings, Linda

June B said...

I am so sorry to hear of your husband's passing. I am relatively new to your blog, but in reading through it I could tell you are a wonderful person and took the absolute best care of him that you could have.

Please don't waste a second thinking you could have done anything differently - you did an awesome job.

Be at peace...praying for your family and for peace for you, especially.

Marcia said...

Dear Karen,

Thank you for sharing your story with us. My mother has Alzheimer's disease, so we know the care that is needed for our loved ones with this devastating disease.

I am lifting you and your children up in prayer. Where would we be without our faith, family, and friends?

Marcia Tuskey
Northern Indiana

Andrea said...

Hi Karen,

Just read your story. I could not stop the tears from streaming down my face. I am not a great writer but always wanted to do a blog like your story. You are such a strong, blessed, caring, loving person. Where did you find such strength? The amazing support you received? Lots of friends & family? I am so sorry for your loss.

I can relate to your story in so many ways. I have 2 kids -a boy-age 5 in May & 8 yr old girl. I am the primary caregiver to my Mom for the last 8 years. Early onset of Alzheimer's in her 60's. Living with me for the last 6yrs. A lot of people tell me I should have my Mom in a nursing home but after reading some of your story, I now know I am positively doing the right thing for my Mom. I have limited supports & always ? If this is the best for have made me believe that it is & I thank you so much from the bottom of my heart that you were able to write about iit as you were living it, unlike me.

My Mom is an only child. I have 1 brother that we do not see very much. All our family is in the United Kingdom. I have my husband's supportive family & 1 very supportive caregiver/friend that gives me the freedom to spend the quality time with my kids & husband.

I once again thank you for your story. I hope I too will have your strength to care for my mom until the end.

Stay strong & God bless you & your family.
Andrea R.
Norwood, Ma

Karen said...

Linda - Thank you - as always. Hope to see you again in DC.
June - Thank you for your beautiful words.
Marcia - I'm sorry about your mom. I will pray for your strength as you continue on this journey. I would be NOWHERE without my faith!
Andrea - As I mentioned, I get all my strength from my faith - without which I would have given up long ago. We didn't have many friends helping us, but those who did, were a Godsend, angels sent from above! I found that many people I thought were friends turned away when we needed them the most. I'm sorry about your mom. Just follow your heart as far as her care is concerned. My children grew up caring for their dad, and as they got older, they were able to help me more. Your children are very young and you need to be careful not to miss out on opportunities with them. Caring for a LO at home takes quite a bit of balancing. I often tell people that they can still be VERY good caregivers, even if their LO's are in nursing homes. It's those families that place their LO's and then disappear who I get upset with. I just always say to follow your heart and do what's best for everyone. What works for one, may not work for the other. I wish you strength and guidance and the love of family and friends.
If anyone would like to e-mail me, you can reach me at
God Bless us all! I pray every day for a world without Alzheimer's.