Unprepared

Metta

With every decline, I feel so unprepared. I know what is coming, and yet each decline surprises me and breaks my heart.

DH was accepted for hospice at home in September. I didn’t think he would qualify because he was still speaking and eating, not losing weight, able to swallow. But he was non-ambulatory.

Yesterday he was recertified. The nurse says that she has observed a decline every week when she visits.

I am sitting here in the dark early morning hours listening to him cough on his own saliva. Yesterday he pocketed food in his cheek and was almost entirely non-verbal. I can no longer transfer him to his recliner because he is too frightened and pushes against me. He loves his showers and I’m so sad he will soon not be able to get out of bed to enjoy them.

This week I was going to buy an electric lift chair for him, but I canceled the order. He can’t sit up and would be at risk of falling. Hospice provided a hoyer lift, but the nurse doesn’t want me to use it because he is so easily frightened. She increased his Seroquel to keep him more comfortable. We are on the verge of being completely bedridden.

Last week I went to a funeral home for final planning. It is something I wish we had done together. I was sobbing before I even parked the car.

I also made plans for a brain autopsy because we never got a diagnosis other than “degenerative” and “Sorry, there is nothing we can do.”

I just can’t stop crying. I’m losing my best friend and we never had children. DH’s adult children finally reconnected with him after 7 months of silent anger, but they did not speak to me when they visited. I am a ghost to them.

I wish I had a question for you, but I know where this is going. And yet I feel so utterly unprepared. I just needed to share. Thank you for being here.

charley0419

I feel your pain , my wife no where as bad as your situation but everyday I think of what’s next most times I feel nothing will get worse but I know better. God Bless you and peace to your loved one. This illness sucks!!!

Kat63

I am very close to where you are in our journey. My DH was changed quite a bit in the last couple of months and even more just the last 2 weeks. He can no longer walk without a walker and when he is tired we use the wheelchair. He is now double incontinent and that just happened this past week. Before I always helped him and he would still use the toilet. I noticed he pocketed food the other day and yesterday I noticed him drooling three different times and he coughed (choked) on taking his gummy stool softener yesterday. I still transfer him from bed to wheel chair to recliner, but it takes several attempts to do so. He too is in Hospice and the nurse says there has been quite a change in the last couple of weeks, and have daily contact with them at this point. Sorry you are dealing with everything alone. Please know we are here to listen.

CindyBum

How in the world does a person prepare to have their heart ripped out?

Big, big hug.

Maru

https://alzconnected.org/discussion/74788/unprepared

sending hugs.

Russinator

((HUGS))

SDianeL

so sorry. No way we can prepare for the gut punches caused by this horrible disease. You are experiencing anticipatory grief. I’m praying for your strength in the coming days. Sending love and hugs. 💜

jgreen

Dean @Metta

My heart is so sad for you! This awful journey amazes me! Every day I think I just can’t go on anymore, and then I do (somehow). Each of us finds that inner strength to be there for our LOs every minute of every day. You are a strong and corageous human being!

💝 Sending you prayers and warm hugs

Metta

Thank you all for your kind comments and hugs. They are much needed and I am grateful!

I wanted to share one great thing that happened yesterday. I have a CNA a few hours a week so that I can go to the grocery store or other errands, and I was looking for jello (never bought jello before!) because the hospice nurse suggested it for hydration, and I came to the baby food aisle. Baby food has come a long way over the years! I found puréed pot roast, turkey, and chicken in individual packets with healthy ingredients. My DH loved the pot roast mixed with mashed potatoes, so at least the day ended on a positive note. I wasn’t sure how to purée his food. I think we bave a solution, and he ate it without coughing!

Call me Gram

Dear Metta,

I saw in another post that you have lost your DH. My heart breaks for you.

I am so grateful for the people who have paved the way on this journey ahead of me, but so very sorry that you had to go through it. I am praying you have found some peace, and that joy will come to you as time goes on.

With love,

Gram

Metta

The loss, the emptiness, the loneliness are indescribable.

I force myself to leave the house everyday to do something. I often feel my DH beside me as a presence. He is always happy and smiling as I imagine him beside me, even while my heart is breaking. Rather than being scary, it is a joyful comfort I cannot explain

There were numerous “coincidences” that became more frequent in the final months, including the last page of my journal being the very day he died. I have taken these as clear messages to deepen my faith in God and pray on eternal life.

tonyac2

https://alzconnected.org/discussion/comment/263224#Comment_263224

Dear @Metta i am so very sorry for the loss of your dear husband. You were a very good caregiver to him. May he rest in peace and may God give you comfort and rest for your soul. 🙏🏼