Tuesday, February 1, 2011

A New Month - A New Storm

The First Storm:
January, 2011
I didn't fair too well with my first month of goals. By mid-January, everything was lost, everything seemed to fall apart. It seemed anything I had to say would be depressing and despondent, so I just didn't write anything at all. Additionally, I had no time or energy to "reflect" or write.

I knew 2011 was going to be a rough year for me and for my family and it started out with a bang. My husband's health condition just suddenly plummeted. He entered the hospital on January 3rd of this year and was discharged a week and a half later. It turned out the cancer had spread to the nerve endings of his spine and had affected his ability to walk. By the time he came home, he was 3 days into radiation, which was going well, but he had decided not to continue with his physical therapy while he was in the hospital. At his discharge, he could barely walk. We were set up with home care to include a nurse visit 2x a week, an occupational therapist 2x a week and a physical therapist 3x a week. I could definitely see an improvement by the end of the first week. The next week, he fell and with family members trying to help him up and bruising from the fall, he insisted on having a week off to rest.

That week was full of questions, concerns and torment for me. I got no sleep. Caring for him was/is becoming more and more of a physical strain as well and it takes longer to do the same tasks we had figured out how to do the week before. I started questioning if its time to call in hospice? Should I just let him rest and not force him to exercise? Should I let him just eat and drink however much he wants?

I began noticing new "symptoms"; changes in his behavior, mood, physical appearance and mental abilities.

To be continued ...


  1. Shari, I can absolutely empathize with your inability to bring yourself to write what you are thinking and feeling. But please don't hold off because of any of us readers. We won't think you are depressing or despondant -- you have every right to those feelings! I'm a little despondant about Ken's condition as well -- and he's not my life partner... Does he have any thoughts on hospice himself? Oh, it just breaks me heart for you. But you must help take care of yourself for sure. You can't lift and do the moving involved with his losing his ability to walk alone. My own personal experience with hospice was a great one with my grandmother. She had alzheimer's, so her 'end' date was fairly open. I don't think anybody had any specific time element with her -- no 6 months or a year kind of thing. Alzheimers is just terminal and that was all our hospice went on. My grandmother became comepletely bed ridden due to her Parkinson's. I live next door to my mom, so I was there to help with changing sheets and wet clothes and things. Hospice taught us to roll her to one side, change and then roll her back. It was very painful for her -- she was in a permanent fetal type position and any movement was painful. There are all the worries with being bedridden, with bed sores (she did develop) and pneumonia (which she never had a problem with). Her attitude remained postitive to the end which was such a blessing to us. The one good thing about her being in the bed all the time was that is gave my mom more freedom. While grandmother could still walk -- or try to -- someone had to be with her constantly to keep her in her seat which is so tiring and exhausting to the caregiver. Grandmother would stay up all night tearing her room apart and my mom's sleep was so broken up. I worry about this effect on you :( It's impossible for one person to be there all the time 24/7. My mom's only escape was to the grocery store or other shopping while I grandma-sat with her. In the end she ate ice cream and that was about it -- she lived quite some time on this unhealthy diet, but it was what she wanted. My mom had to spoon feed her, she had trouble swallowing -- I think to do with Parkinsons. My mom was so great with her, bathing her and rubbing her with good smelling lotions. My mom will be treated like a queen in her old age -- she was like an angel to her mother.

    I dont' know if what I'm saying is helping or hurting, it's just my experience with end of life planning. I know this is your place to vent, please excuse me for venting in your place. I'm crying now as I type as I consider the hard road ahead of you. I am so sorry things are moving so fast -- with grandma things moved very slowly and she was 93, so it was much easier to let her go. I hope I haven't said completely the wrong things to you here... I hate the subtle changes you mention as you ended. The changes in his mood and behavior. I guess he is tired, too :(

    I love you Shari and pray that things work themselves out as you move forward.

  2. Shari, I know things are horrible for you right now, and that you will make the right decission on things. I would call hospice and see what they think. They may give you advice that you haven't heard before.

    The key I think for me if I was in your situation is to charish whatever time you spend with him. Realize, that this battle is something you are both going through in different ways. Most importantly, don't make more battles than you can deal with at a time. You can only do what you can do, and leave the rest up to him and god. Try to love and laugh with him as much and as often as you can. For when things get really bad (and they probably will), that is what will help mend the broken.
    On going prayers for you and your family still going on. Love you both and know you have a whole team of moral support behind you. :)

  3. I wish I could say something that would be so profound it would change everything. But I can't. The helplessness one feels in a situation like this can only drive them to God or to despair. I know you have chosen God. You can only make daily decisions as the need arises and pray and believe God for His guidance at that moment. Never second guess. You do what you feel is the absolute best at that moment in all your frailty and have faith in God for the rest. That is all He asks. One day we will see clearly what this has accomplished in our lives and in His plan. You are being carried on a bed of love and prayer by your dear friends, the PJ sisters.

  4. Dear Shari~
    I know, since this is your place to "vent" that it is okay to speak frankly. I know the main concern here is Ken's quality of life now...but in reality, it is also about your quality of life as well.... if Hospice is an option it is definitely worth considering..I can imagine that Ken may want no part of that....it would seem an utlimate acknowlegement of what the future may hold...but, Shari, you and your loved ones can not make themselves crazy trying to meet Ken's needs (which he is thoroughly entitled to having met!..)while trying to meet the daily needs and requirements of your own daily lives...to include simple things like restorative sleep, moments of peace, and just a brief break from the non-stop realities of dealing with Ken's life situation.

    You need help, beyond your family and friends, and although Ken's ultimate comfort is paramount, you need to be able to function on a healthy level yourself, as much for yourself as for Ken. So, please, although it may be uncomfortable at first to have someone "new" in the mix for Ken, if you can find anyone(college student, home health aide, nursing support, etc., or whomever may volunteer ;-) to help out, even with basic things like housekeeping, laundry, groceries,etc.. anything that takes even a little bit off your "to do" list, please, please consider it.

    My grandmother, who is 90 now, but was in her late 70's at the time, helped care for a friend of hers at the end of her life due to Lou Gherig's Disease...Her friend, Alice, was totally coherent until her last day, and my grandmother sat with her, talked with her, moved her physically, changed her, feed her, and talked with her constantly...in fact, Alice once said to my grandmother, "Dot, I hope you just drop dead someday!" But my grandmother knew what she meant was that she hoped she never suffered through the same humiliations of not being able to take care of herself. In the end my grandmother's contribution was more than just being there for her friend Alice, it was also about allowing Alice's family, who were taking care of her full time(and more than happy to do so...) having the ability to take of their own personal and family matters, situations, or just to have some personal quiet time, knowing their Mom was being taken care of...

    Shari, you owe it to Ken to be as healthy as is possible yourself at this time, so PLEASE consider outside help as much as possible...I have the impression that it may not be something Ken is comfortable with, but it may also be something that in the end, he truly counts as a blessing! PLEASE, let me know if there is anything I can contribute from here, of if there is anything I can help with closer to home!

    You and all yours remain in my prayers! And I truly pray I've not offended you....God Bless you all~