Don't Lose Heart

As my Mother declined over three weeks, I wrote updates to inform my FB friends when something significant happened. They show the thought process as I went through the various last steps.

Thursday 05/26/11 (?)
Mom’s dementia has been progressing slowly over the last 4-5 years and although I’ve BEEN able to feed her, help with potty breaks, give her meds and have her at least know that I’m her son (thanks to her taking a new med, Seroquel) her motor skills, such as holding a spoon, standing, walking, or eating have suffered greatly in the last couple of weeks. Last Thursday, I think she had another TIA (5 min. mini stroke) and the nurse who was here said aspirin and observation would be adequate unless they last more than 3-5 min. Also she said there might be more in the future. From Thur to Sat,, Mom talked nonsense constantly and Sun & Mon just moaned with a slight fever and sweats all the while sleeping most of the time. Mon. she also had two TIA’s 3 hours apart. She collapsed Tuesday with what I think was another TIA getting into a cab (car’s being fixed), bruised her face and they found severe dehydration and some bleeding on the brain.

I just got back from the hospital, she’s in a better room but slept the whole time. Yesterday I told the doctor to revive her if necessary but no machines. Overnight, I decided she’s suffered enough and if her heart fails or something, they shouldn’t resuscitate. (DNR) She ate some Italian ice for me, (she loves ice cream the last year or two) and even managed a mumbled “I love you” but I don’t know if she’ll ever be the same and I haven’t changed my mind about the DNR. God has been kind to us so far… every time she has major fall, something good comes out of it. The first fall brought home nurses, an aide to shower her and safety gadgets; the second brought day care and some time off one day a week; and now I’ve had to start facing the emotions, a DNR, and the prospect of putting her into a short-term, facility for a while, hopefully long enough to make some arrangements and financial options.

Saturday 05/28/11
I don’t know what to do or think!! She slept all week and only woke 2 hrs. on Thursday when I fed her Jello and Italian ice. Thursday I told the doctor no feeding tube when she said Mom couldn’t live on saline alone. I’d pretty much resigned myself to her not lasting the weekend.

Friday, she was awake, talked, ate Jello and Italian ice, drank, & did bodily functions!! THEY haven’t been able to get her to swallow anything so no meds all week. She was calm when I came in, but started getting moody (what Seroquel remedied), called me an SOB for not getting her out of there, said that I didn’t give a crap (normal for her), and was crying from frustration when I left. To me, she’s just a confused, little girl now who thinks she’s being punished. I had resigned myself to the inevitable and now I don’t know. Of course, I don’t want her dead but I don’t want her to suffer mentally with something that will not get better. Alzheimer’s, unlike cancer, has no cure or remission. It just gets worse.

The plan is to reassess on Tuesday and maybe a short term nursing facility. Hospice after that?? It’s out of my hands, whatever God gives me, I’ll do my best to adapt.

Tuesday 05/31/11
After starting to eat soft things over the weekend and showing signs of minor improvement, they assessed this a.m. and are sending Mom to a nursing home until further notice. I know the AD will eventually do her in, but for now, she seems to want to stay with us. I am grateful for any extra time right now!! She’ll have to eat on her own and no saline but that looked possible.  Long term or hospice is to be considered after a few months. I wonder if the meds that kept her moods manageable, dulled her spirit.

To anyone who doubts divine participation, we were considering two homes since Friday. An opening came up this morning at a different place that’s closer. It just happens to be 2000 ft. from where my Dad is buried and they are not connected. Hmmmm…

Friday 06/03/11
This is a good update and no reply is necessary thankfully. A week ago today, I had decided no feeding tube and didn’t expect her to last ’til Tuesday. She woke & ate Jello and Italian ice the next day. Tuesday, she went to a nursing home.  Today, she ate a whole plate of pureed chicken, mashed potatoes & gravy, peas, ice cream and ginger ale!!

She’s been behaving without the psycho meds and is restless. She still may not come home again but I am relieved she’s being taking care of so well. The place is as nice as any hotel I’ve been in and her room is 18′ X 20′ with only two beds. They had a big Grand Opening yesterday and I unexpectedly walked in to find an ice sculpture with maybe 400-500 huge shrimp, Bruscetta, sliced eye of the round on toast….. I no longer expect anything and deal with each day one at a time in a most thankful way.

Thursday 06/09/11
This morning I’m tired from stress and I’m mad!! Please bear with me as this may be the last long rant I get out of my system. Once again, don’t feel obligated to respond if you don’t care to. The value here is in me collecting my thoughts and being able to share and I thank you all.

When my Dad died, he had a burst aneurysm and the doctors wanted to know if we wanted them to try to fix it. I had looked into his eyes and it took 30 seconds for him to know who I was from blood loss. I had to decide to let him go because my Mother never could make decisions in a crisis. (a special curse/gift I have). It didn’t matter because he went while we talked. But I still had to decide!! Now, once again I’m making the same choice I made two weeks ago. I’d hoped my Mom would pass peacefully without my participation, but damn it, I’ve got to decide again!! I’m tired of this crap!!!

I had decided before Memorial Day, no feeding tube and to let nature run it’s course. She came back, went to a nursing home and ate well for a week. But I think deep down, she’s very tired and realizes she’s not coming home and wants to give up.

In spite of drinking & eating all of her food for 4 days, she vomited 4x Tuesday and was sent back to the ER Wednesday. She was diagnosed with dehydration, low BP 85/45 and a UTI. She stopped “talking/mumbling” a week ago, and hasn’t made any moves on her own in a couple of weeks. Actually, this decision I think I’m making, is being made by her as she doesn’t have the capacity to fight anymore. So she will stay in the hospital and be made comfortable. The ER doctor was going to give her IV saline and antibiotics yesterday, but her doctor called today and felt letting her go would be best, no IV saline, food, or antibiotics. It seems like her body’s just wasn’t accepting anything.

I’m mad I had to make some kind of decision again, I’m mad she got dementia which two of her other sisters also had, I’m mad she smoked for 70 years which couldn’t have helped, I’m mad she was so self-centered and never acknowledged how I turned my life around 12 years ago, I’m mad she never realized or gave me credit for helping around here or taking care of her and I’m mad I’m already talking about her as if she’s gone.

She was a person who grew up in the depression and did everything out of fear. She always wanted something she didn’t have and if she got it, she’d want something else, never being satisfied. I’m afraid the only satisfaction & peace she may find is in passing and that’s sad. Her motives may not have altruistic, but she was just watching out for her survival and she NEVER let me down when I needed her. I’d like to think for the past few years, I’ve returned the favor. I sound a little bitter, but only disappointed, and I couldn’t have loved her anymore than I did and still do. She may not have always inspired me by example, but I think I’ve become who I am in spite of her. I am however grateful for many blessings that may outweigh the anger. I feel like I’ve had an angel or something looking out for us. Every time I felt overwhelmed, something would happen to help me cope better. I’ve had 25 years to do everything with her, get to know her better (good & bad) and make many fond memories. The final process has been slow and agonizing but never more than I could handle at any given time, and I’m thankful I am now a far different person than when I started this.

Friday 06/10/11
Thanks to your unusual kindness and encouragement, i have made a short list and added you to it. When anything significant occurs, I send out updates to many. But, I’m getting down to the end and I feel the need to vent a little to stay sane when I come home at night. Emotions are all over the place, and focusing and writing thoughts down really helps me cope. As I’ve said, I know you care and replies are not necessary, Just knowing you share this new experience with me is enough.

You’ve seen the “hands’ profile pic which I took when Mom wouldn’t let go of my hand yesterday. This, along with opening her eyes slightly and a faint smile twice was quite moving.

Today, she was wide awake with eyes open when I came in. This is the first time I’ve seen her eyes since last Sunday. She stayed that way with varying degrees of attention for a couple of hours and I spoke to her normally as I don’t know what or when she understands. I talked about loving her always and being sorry I couldn’t take care of her anymore. I explained I’d done the best job i could and that I hoped she was proud of me and that I was proud to be her son. I told her I was sorry she had to go through this, that I would be alright alone and she could let go if she felt she couldn’t deal with this anymore. I’ve been told giving permission is a good thing to do, though knowing her as I do, if it registered, she was thinking “Don’t tell me what to do!”

She responded at times with little moans or grunts and other times a blank stare. I felt a connection and I guess only we will know.

Saturday 06/11/11
Quiet day with Mom sleeping & only waking briefly at times. (She gets minimal morphine every 2 hours. if needed to help breathing and anxiety) A nurse from VNA, (Visiting Nurses Assoc.) came by to do paperwork that allows them to share nursing/hospice duties with the floor nurses. The VNA has been an absolute Godsend all along. from the first time she fell & was hospitalized (home nurses, hardware tips and an aide to wash her) to the nurse who sat with me for two hours explaining some of what to expect. Mom had a couple of moments where she stopped breathing for a few seconds and the nurse reassured me that would happen (apnea) and she looked like she might last a while longer.

My anger from having to accept making the decision again is turning to acceptance. Most people don’t know when they’re going to go…. in a way, I’ve been blessed with the time to prepare and accept the inevitable.

As always, thank you so very much.

Sunday 06/12/11
A quiet afternoon, 5 days without fluids or nourishment. Since I told Mom it was OK to let go and gave permission, I could swear she’s hanging on because she never wanted to be told what to do. I know the imagination runs rampant and sees what it wants. I will share one thing with you that has guided me through this process – a set of someone’s brain scans who has Alzheimer’s.  The x-rays show a healthy full brain and a brain that’s shaped like an oak leaf with about one-third missing. Whenever I have to make a decision or have some momentary optimism, I think “no one’s ever been cured of this and those brain sections aren’t growing back”.  I also think I saw what can be construed as a defiant look but I don’t think that is possible. It’s more likely frustration as she doesn’t seem able to talk. Also, she can’t purse her lips normally anymore and does this when kissed. Thanks.

Tuesday 06/14/11 7
Days without food or fluids. She’s been hanging on but the pastoral counselor from Visiting Nurses made sure I was there when she was today, we talked and prayed, and I noticed her urine was getting dark in the catheter bag, usually a sign of kidney shut-down. I would assume it won’t be long now and although I don’t think she’s in a lot of pain, she reacts to touching her hands or bones and gets agitated more than before, needing her morphine. The woman who said a month ago everything would be over soon and that she wanted to jump in front of a car, is fighting no matter what I say allowing her to let go.

Thursday 06/16/11
You may be wondering but don’t want to ask, so I guess an update is in order. 9 Days without food or fluids!! My mother is amazing but totally in character. I learned so much about her in the last few years. I jokingly called her “Mary Mary, Quite Contrary” because she always did or wanted what wasn’t expected of her. It was her way of having an identity, I suppose. It’s hard to believe the woman who, 6 weeks ago would threaten to go “down the street” if her dinner wasn’t ready in 4 minutes, has gone 9 days without any nutrition or fluids!!

I take a couple of photos daily and was disturbed to see what looked like fear in her face the last two days. It’s probably coincidence but this is something that I do not care for! They told me hospice would be peaceful so I told them to keep the morphine coming if it keeps her tranquil. I’ve told her everything I have to and if she senses the end, I don’t want her afraid or upset. Therefore, she didn’t wake today when I was there and just slept.

Friday 06/17/11
My dear Mother and best friend, Mary Lushinsky Tourangeau, passed away at 3:55 a.m. this morning, Friday, June 17, 2011.  She slept peacefully the whole last day and I was with her until a few hours before. Per her request, she will be quietly cremated and brought back home. No services will be held and if you are so inclined, please send a few dollars to Alzheimer’s Research to combat this insidious and cruel disease. Thank you to all who have provided advice and support – I would have had a really hard time without you.

Sunday 06/19/11
My Mother has been gone 2 days now. When I left the hospital, the day was beginning and when I reached home, a HUGE thunderstorm opened up, and all the while a small bird stayed outside an open window singing through the whole thing!! The bird, who I don’t remember from before, sounds different and is still here. It’s wishful thinking that such a thing is divine intervention but too many minor miracles have occurred through all of this to dismiss it. Much like when Mom went back to the ER from the Nursing Home for the last time, and the TV froze on a station with sunsets, oceans, poetry and quiet music, and I couldn’t change the channel, lower the volume or turn it off!! There was something at work here telling me to pay attention…. this was serious and probably the end. There are signs all around if you open your eyes and look for them.

I spent Friday, making arrangements and doing all that I could on a weekday with only a couple of hours sleep. After a long sleep Friday & Saturday night, I woke to 2 days with nothing to do, nothing to worry about, nowhere to be, no concerns about someone’s else health and well-being and no more suffering and frustration to have to witness. The 9+ days of watching my Mom without food or fluids was like the longest wake I have ever been a part of. And by the end, when I saw what I thought was fear and distress, I too was ready for all of this to end.

Now, I sit here on a beautiful Sunday afternoon with a slight sense of loss although over three weeks, I have sort of gotten used to seeing an empty couch. I do however, have an overwhelming sense of relief, not glad that she is gone, but that she isn’t hurting, isn’t confused and doesn’t have to feel she is being punished with a body that just doesn’t work anymore. I’m beginning to sort out how I miss Mom sitting on the couch, playing a little poker machine or doing word puzzles while watching game shows. I do not miss watching this poor woman with a body that was wearing out and a brain that was attacking itself from inside causing her pain and frustration. I am glad that is over and I feel that I couldn’t have done anything else to help. No regrets here.

The toll caretaking takes on you is becoming slowly evident as I realize that I’ve actually cooked dinners for the first time in over a month. You adapt and forego your own tastes, when you’re in the midst of things to make it easy for the person you’re caring for with quick, microwave foods.

I suspect after the business is done, and I bring her ashes home to “watch game shows” from the shelf, I will have let-downs. But thanks to this wonderful internet and the people I’ve been in touch with, I don’t think it will be too bad. My distant family is even contacting me after a prolonged lapse and they may even have a new respect for me.

Saturday 6/25/11
Now that Mom has passed, everyone tells me to “take care of myself”. Right now, I feel like I’m balancing relief with sorrow pretty well. I do however worry about others who may not be doing too well and would like to share. During the care-giving experience, I have found it extremely important to be open to “miracles”. And while a cure for your problem or sudden riches would be wonderful, it’s the small things that you have to “look for” to keep you going. Two examples that come to mind: Medicare had been paying for home care to shower my Mom but was expiring. Faced with having to pay for continued care from a fixed income, my prayers were answered in a very practical way. When I asked my insurance agent the correct date for payments, she misunderstood, reviewed my policy and reduced my payments from $1500 to $600/yr. And when the $240 Alzheimer’s medicine Mom took went generic to $100, a few weeks later, she required a new $140. medicine. Same price now, but two drugs! These are the little “miracles” to be thankful for that help keep you going.

And there are occurrences that require a growing faith that can’t be proven. When my Mom was being transferred to a nursing home, a last minute opening came up at a place 2000 ft. from where my Dad was buried. And the morning she passed, I heard a new bird singing outside my window through a torrential downpour. The bird has been there everyday since except for what I calculated to be the day she was cremated. My Mother’s spirit… Divine inspiration? Who can say… that’s why it’s called faith.!

Recently I heard a saying: “Coincidence is God’s way of being anonymous”. In the end, whether it can be proven or not doesn’t matter. The important thing is the positive outlook that results and helps you cope with another day. The reason I started writing this? As I looked out my window this morning, I finally saw the singing bird, a red robin….. playing with another red robin on the lawn, maybe my Dad? The bird is singing as I write this… I think she approves!!