“I am cherishing every moment we have together.” That is what I said in last night’s post after the challenge of feeding Mary Ann. I lied! As terrible as it sounds, I don’t cherish every moment. At 4:15am after having been aroused for one thing or another multiple times an hour (the last one only five minutes before) Mary Ann insisted on getting up. I did not cherish that moment with her. I got her up and out in front of the television in the living room and went back to bed for an hour. Then she was ready to lie down, at least for a while.
I guess I am a terrible Husband and Caregiver to admit to not cherishing at all times my sick wife on the last leg of her journey from here. Yes, I do feel guilty about it. I sound so sweet and loyal and loving when I say I cherish every moment with her. I am not all those things! I am just an ordinary selfish somebody trying to live out my life and my relationship with Mary Ann with a degree of honor, expressing my love for her. I do cherish most of the time with her, extending even into waste management. I just get grumpy when I don’t get my beauty sleep. (Who is going to be the first smart-aleck to suggest just how clear it is that I am seriously sleep-deprived?)
Is it the Amantidine that we resumed that is making the hallucinations and restlessness so intense, or, since she had slept four days, were we just due for the usual return of that behavior? God only knows, and He ain’t telliin’. How about the idea of somehow trying to get God a wireless router so that he could just email responses to prayers and cries for help?? How getting on that, Steve, Bill?
When Daughter, Lisa was here last week, her Mom slept all but about four hours of Lisa’s visit. “Lisa, I would gladly have traded last night for one of the sleep days or nights you had when I was gone.” Yes I am grateful that Mary Ann is napping now. I gave her the morning dose of Amantidine, still hoping that she will regain the use of her hands and the ability to assist with her leg muscles when being transferred from her chair to the bed or toilet stool or dining room chair or car, should we be able to get her out again. This almost 67 year old body is beginning to show its age (the mind is still 25 years old, except for the memory which is pushing 90).
At one point last night Mary Ann was convinced that she was not in her bed, but another bed like hers. She was convinced this morning that the dining room table was not our our dining room table. In fact when I first tried to transfer her to the dining room chair for breakfast, she refused since she didn’t want to sit next to the bride. At least when I checked with her, the bride wasn’t Lulu (the woman I married after divorcing her in one of her dream/hallucinations). She didn’t know who the bride was. When I asked if she wanted me to turn on the television she said it was “his” television, not ours.
She has been napping for about three hours now. Yes, I am grateful for the break. I just don’t want her to sleep too long. She had a good breakfast, but she has not yet had lunch. It is after 2pm. Our Daughter-in-Law Becky relayed an email from a close friend who works for a Hospice. In that email, she said that people come to need less nourishment at this time in life, suggesting that I can relax if a meal is missed. Mary Ann always “ate like a bird” — one reason she has never gotten overweight (very annoying) in all our years together. Other than ice cream, she usually eats what would be the equivalent of a child’s portion (a pre-teen child).
This morning Bath Aide Zandra brought a helper with her since Mary Ann had fainted so many times the last time she did her shower. Zandra was concerned that Mary Ann had hit her head because she couldn’t get into the right position soon enough to stop her from falling off the shower chair. She asked about the possibility of getting a secure three sided shower chair so that Zandra could stand in front and be sure she wouldn’t fall to the side. We had a tubular metal rolling shower chair that we obtained a few years ago. It turned out to be unsafe because of the reinforcing bar across the front, making safe entry and exit from the chair virtually impossible.
Zandra was a bit distressed to see how much Mary Ann had declined since her visit last Wednesday. Today Mary Ann could not assist at all in getting from the transfer chair to the shower chair and back. Mary Ann’s hands were fine last Wednesday but swollen and clubbed (nor sure that is the right word for describing the claw-like form) today.
I just called our Hospice Nurse, Emily, who listened carefully to what we needed for the shower. She said she would try to find it for us. In fact, she said that if we didn’t hear from her, one would be delivered tomorrow afternoon. Holy Mackerel!! That is an unbelievably fast response. I have seen PVC pipe chairs that looked sturdier, but the last time I searched a couple of years ago, I didn’t see one without a bar in front. I hope the supplier Hospice uses has something workable.
Mary Ann had an appointment with the Dental hygienist for her much needed quarterly cleaning scheduled this afternoon. I did try to get her up in time to go, but she declined. That was at about 1pm. It is now 2:45pm and she is still sleeping. Again, she didn’t want to go to bed until after 11pm last night and spent much of the night, especially from 2am or 3am on, up and down.
She slept until some time after 5pm. She ate a good supper, sat in front of the televsion for a while, then headed back to bed about 7:30pm. At about 8pm she was hungry and wanted a bowl of ice cream again. After taking some Ibuporfen for back pain and then later taking her night time meds, she is now lying down. I am not expecting her to settle in without lots of restlessness tonight. We will see.
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March 9, 2010 at 3:20 am
Pastor,
My heart goes out to you and your beloved Mary Ann. I hope you do not waste a lot of time feeling guilty for a perfectly human response. I know, even though I never really knew Mary Ann that for her you are her angel. God’s peace and strength is what I pray for the days ahead.
Rose B
March 10, 2010 at 3:30 am
Thanks, Rose, I am grateful to know about the Cross and the forgiveness that comes. It helps at times like this. Thanks for the prayers.
Pr. Pete
March 9, 2010 at 12:54 pm
Pr. Pete:
Remember it is ok to be human. The love has not changed..it remains. It is ok to be frustrated Pete who loves so much he wants her to have NO PAIN or suffering. Take it easy on yourself. Rest in Him!
March 10, 2010 at 3:31 am
Thanks, Sandy.
March 9, 2010 at 3:33 pm
I am so thankful that you are allowing the support of hospice. A wonderful organization that will help guide you in ways you possibly can’t even imagine. If they are unable to find what you need for the shower chair, let me know. It sounds like what we use for my dad would possibly be functional for you and Mary Ann too. Oh, and Pete, it’s okay to not cherish every single moment, we would worry more if you did. It is obvious how much you cherish her and the overall experience.
March 10, 2010 at 3:34 am
Thanks, Kim. Your input through Becky has been helpful. They think they have found the right chair. It should be delivered tomorrow. The Nurse and Social Worker both came today. They were great.
March 9, 2010 at 4:42 pm
Your ability to communicate is remarkable. For those of us who have watched the decline of one we love, the pain, exhaustion, and love do create conflicts. Thank you for sharing in such a meaningful way.
March 10, 2010 at 3:36 am
Christel, Thanks for the affirmation. It sure helps to have the outlet of writing about what we are experiencing. I always appreciate when someone takes the time to read it.
Pr. Pete
March 9, 2010 at 4:48 pm
Peter,
I for one can surely relate to not being able to cherish every moment. We have certainly had our days of non cherishing here. I take some comfort in knowing that at some point I can look back and say, these were the good days, I had him (Hubby).
I’m so happy you have hospice, They are certainly “Johnny on the spot” for supplying needs.
As far as bathing, and I know you say Mary Ann enjoys her shower, have you given consideration to bed bathing? It would certainly cut down on the possibility of a serious injury. Soap plus water can make for a serious slippery situation even if she is sitting in a chair.
I also understand your desire for Mary Ann to eat more. I am glad Becky shared that e-mail with you about food requirements. I also realize it’s difficult to accept.
Thoughts and prayers are with you Peter as well as with all of us traveling this Lewy road.
Kathy
March 10, 2010 at 3:42 am
Kathy,
The unique characteristics of Lewy certainly are impossible to explain to anyone who hasn’t been with it day by day. The Bath Aide’s Supervisor left a message today that tomorrow Mary Ann will have a bed bath. When the new shower chair comes, we will see how that goes. Mary Ann does seem to be regaining a little of the strength she lost when we discontinued the Amantadine, now that she is on it again. It has been a strange week (as most of them are).