Thursday, March 21, 2013


I know some people are wanting to hear news about Dan so I will write a short post. Dan's condition continues to deteriorate. He cannot eat and takes in very little fluids either. He is extremely thin and his balance is very poor. He spends most of the time lying on the couch. Though deaf, he can watch close-captioned TV, but is no longer able to concentrate on books or newspapers.

He is now under hospice care and the nurses and the social worker have been, for the most part, wonderful. I truly believe they are guardian angels in human form. Hospice is all about the patient's choice. Dan  is a very stubborn man and is at the point where he is refusing to be shaved, bathed, have his teeth brushed or his clothes changed. But that is HIS CHOICE. He also refuses the hospital bed we had brought in, plus the walker, plus the commode. He gets very angry when we try to offer him help of any sort. This is hurtful to me, but Kristen keeps reminding me that it is the brain tumor talking, not him.

By choosing hospice care he is able to have his main end-of-life wish fulfilled, which is not to be hospitalized, and to have only palliative care.

He is not in pain but has meds available for pain, anxiety and nausea. My sister is watching him for 10 hours a day so I can continue to work as long as I can because I have very little vacation time and even less sick leave. I spent most of last week at home and was able to use family sick leave for that.

My biggest frustration is trying to get some respite care arranged for me to have a few free hours on the weekend, but so far it has been a battle of agency red tape.

I wouldn't wish this situation on my worst enemy. More than anything it is mentally exhausting, but I feel physically drained as well. I am sure that the support of my family and my friends in blogland has helped keep me sane and putting one foot in front of the other for this long. Thank you so much.



The hospice nurse was able to bathe Dan this afternoon, get him into a gown and get him into the hospital bed. He looks very warm and comfortable now. Some say there are no coincidences. A co-worker of Amy, one of our hospice nurses, grew up in Langdon, ND, where Dan was a physician's assistant for five years. Dan used to work with this lady's mother at the Langdon Clinic and the daughter remembers him too (from the 1970s!). Yesterday Amy brought over a beautiful quilt given to Dan by these two long-ago friends.


Kim Campbell said...

Julie- ((((((hugs)))))). I really don't know what to say other than I think of you, Dan, and your daughter and pray for you.

It is truly difficult to be a care giver and my experience was short and not as stressful as yours. My mother in law moved to a nursing home near my sister in law. She has dementia.
You are a strong and compassionate woman.

WOL said...

I think of you frequently and prayerfully. One of the most heart-rending things that a person must endure is to see a loved one suffering and be powerless to stop it. It's physically and emotionally draining. It grinds you down spiritually. No wonder you are exhausted. I am thankful that you are not alone, and that your daughter and your sister are there for you. As your daughter so wisely pointed out, the tumor is affecting Dan's behavior in ways that are both pervasive and profound. It is stealing him away from you. You may find some help in dealing with this by researching advice to caregivers of patients with Alzheimer's. I hope your relationship with your sister and your daughter allows you to talk and to share your concerns, your anger and frustrations and your grief with each other. You need this "vent" to help you deal with the stress you are under. Blogging helps too. It helps you verbalize your feelings and get them out where you can deal with them. Remember that while your blog friends may be scattered all over the globe, we are never more than an email away.

Annie Jeffries said...

There is nothing so hard as taking care of a loved one as they slip away. I'm sorry the tumor is making Dan speak in a hurtful way to you. Hold on to the knowledge that you had many happy years together caring for each other and supporting each other. Hold fast to you daughter and sister. They will have all the love you need to sustain you and of course, the love you have from Him who loves us all. Bless you and keep you both.

Maggid said...

Thank you for sharing with all of us.
I wish i could be there - to help in some way -
I bet many of us feel the same

Sending you Love, wishing for you comfort - strength and peace -

Willow said...

Julie, I wish for you some laughter somewhere in your day, I know that may sound odd in the situation but there is always. I hope somewhere Dan can find some laughter still in his life too, their is great levity in laughter. I remember how hard this phase was for my father and our family. Sending love. Willow

Mary said...

Bob just asked me this morning if I had seen anything new from you my dear. I am glad you have posted but so sorry that things have been difficult. I know you must be exhausted so be sure to take care of your health too. Hospice workers are amazing and definitely angels in disguise. I have seen them work with friends during those last months of terminal illnesses - it was unbelievable how patient and kind they were in their dedication to their jobs.

Our thoughts and prayers continue daily - hoping Dan does not suffer with pain and that you, Kristen, and your family (great sister to help out) share the hard days ahead knowing you are all doing your very best for that lovely man.

Please keep in touch Julie - we really care and want to remain informed. Holding you close in thought.
Love, Mary (and Bob)

Leanne said...

Julie, sending my love and support. You are so brave, so dignified in your handling of these heartbreaking, traumatic weeks, and so honest in your writing. I repeat again, i wish i was closer, not oceans away, so that i could physically help you. Holding you all in my prayers, Leanne xx

Kath said...

No useful words from me Julie, just a wish that I could be there with you, to hug, to make tea, to sit with Dan or just sweep the yard.
Please know that your friends care very much and give thanks that Dan is comfortable.

Rose H (UK) said...

Hello Julie
I'm deeply saddened to read about the deterioration in Dan's health and cannot imagine how you and your family must feel. It is good that you realise however that it isn't Dan talking but his disease. I know he is in the best place for him, but you MUST have time for yourself however it may seem to others as your needs are just as important.
Your friends have left the most amazing and comforting comments here, and I especially agree with Willow that I hope you both find some laughter each day.
I continue to think of you both across the miles and send nothing but support and love for you both.
Rose H

JoAnn ( Scene Through My Eyes) said...

If only we weren't so far away - we would be your weekend respite. Work, though useful, is not restful for you and I know you need that. My heart feels your pain, as we watched a family member go through this same thing not long ago.

I applaud your attempts to let Dan have his way - I would think that it is most frustrating to have to watch him deny help - but it is his choice and you are wonderful to give him that dignity.

I hope he rests comfortably under the gift of the quilt - what a thoughtful young lady.

Hugs and endurance for you my friend.

Annie Jeffries said...

Awww, Julie, I'm so sorry yet so grateful that he has found peace. I will post Dan's name on my prayer list for prayers for the repose of his soul God bless you and strengthen you during this difficult time of transition.