Friday, May 16, 2008

Hospice came today

The folks from hospice came today. The woman who came to do the intake was a gal I went to high school with. She filled out all the paperwork and got us set up. Around 5 p.m. the nurse came to do an evaluation. She’s not the nurse who will come regularly but she does the evaluations. And she showed me several things I can do to make Mom more comfortable.

Not knowing about these things, I learned today that if someone in Mom’s condition lies on one position long enough it can cause bed sores in all kinds of places. Her skin is very thin and dry and just the heel resting on the sheet had rubbed a sore on both feet. I was sick. I keep her in socks to keep her feet and legs warm and I hadn’t thought to take them off this week and examine her feet. And she apparently does not feel any pain.

She had a spot on her rump from overnight wetness. It happened the second or third night because I didn’t want to wake her as she was sleeping so soundly. I should have. I couldn’t figure out how to keep her off of it because no matter what I did she rolled back over on her back. The nurse showed me how to roll her up on her bed pad and put a pillow under her and ease her back onto it so that one side is propped up a bit. It looked easy when she did it. It wasn’t too bad when I did it the first time. But when I changed her diaper pad I had to move her all the way over and she moaned a bit as I brought her back.

She soon settled back and is asleep again. She doesn’t respond at all now. This morning she responded when I said good morning but that’s the last word I’ve heard. I wonder if I will ever hear her say anything again. Just a few days ago, I lay down beside her and put my head over close to her and she stroked my hair. I was upset because she wouldn’t eat for me. She tried to comfort me. Still Mom. But no more.

I never did get my bath today. Heck, I didn’t even get to brush my teeth. I was up late, checking on her. When she appeared to be sleeping soundly, I finally collapsed in my chair and that was after 2 a.m. I was awake at 5 a.m. and checked on her. When I went back to sleep I slept like a log. The phone woke me this morning and I got up at quarter ‘til nine but I was in a fog. However, the phone kept ringing so I just fell into my usual routine. Start coffee, change Mom, try to get her to take water. She didn’t want that either and now I know I should not try.

I think I will brush my teeth, at least, and try to get some rest now. Emma wants me to go to bed so she can curl up with me. I know she is an unusually affectionate cat but I think she senses that I need her comfort. She spent much of last night sacked out on my chest with her head up under my jaw. She must understand that Mom needs comfort, too. She gets on the bed with Mom for afternoon naps most days and today she went into Mom’s room with me each time I did and even accompanied the nurses. I guess she thinks she needs to supervise.

Arming yourself with information

This is an article that anyone who is confronted with Alzheimer's should read. It's full of information that your doctor might not have told you but which helps you to put the situation in perspective. I highly recommend it!

http://www.alternet.org/healthwellness/85532/?cID=908601#c908601

Thursday, May 15, 2008

I wish I had started this blog long ago

It seems like all this has happened overnight when I know that's not so. Her declining mental abilities were apparent by age 82 and she is now 86 but the process is so overwhelming. I realized today that I have been going at a frantic place to provide for her needs, including working to keep a roof over our heads and food on the table. Working from home has advantages and disadvantages, one of which is that you don't make as much money. And when Mom was like a worm on a hot brick, she was a hand-full. Trying to pacify her and also focus on a writing assignment could be tough. But I would trade the quiet for the distractions now.

Two cousins came this morning and visited with me for a while, visited with Mom and helped with a few things that needed doing around the house. I could have used that kind of help for months. And, unfortunately, I think some of it might have been available had I only known. I just didn't and with money so tight, I was afraid to ask. Clearly, when Alzheimer's attacks a family unit, there needs to be some sort of case management available and covered by Medicare, to help the caregiver get his/her bearings. Having it out there on the web or in print doesn't help a person who has so much to do that some days they don't have time to brush their teeth. That hasn't happened often but it has happened. Or the day has gotten away from me, especially if I slept in the chair downstairs, and by the time I brushed and flossed, it was bedtime.

The doctor observed when we spoke the other day that I had probably denied myself routine medical care because I was afraid to leave her. True, I have not had all the check-ups, blood work and so forth that I should have had but until the past few months, the reason was that I had no medical coverage and little free cash. But I will say that for the past year, it's been as much a case of being stretched too thin as the money problems. I have witnessed elder poverty first hand; in fact, I have shared it.

Ed, another cousin, came by after work and we both tried to persuade her to eat some ice cream but had no luck. It's frustrating -- it's been frustrating. But now it is also sad.

Keeping vigil

Today, Mom doesn't want to drink anything. I'm doing what I can to maker her comfortable and she is sleeping peacefully most of the time. I think she hates to have her diaper changed. I have to turn her over on her side, first right then left, to get the diaper in place. I'd like for her to lay on her side for a while to give the bed sore she has developed some air but she is miserable for the short time it takes me to change her so that's out. I apply ointment to guard against diaper rash and plenty of Gold Bond powder and tuck her in again.

I don't think it will be long now.

I am having difficulty to focus on even the simplest tasks. When I try to talk with someone, I start to cry. About the only thing I can do is to write. And I am too tired to do much of that now.

I've got to write Mom's obituary. She told me a long time ago what photo to use. Funny how you think of these things. So I called about that today and found out what is involved. I'm trying to find mindless things to keep me busy, I guess. It's not working too well.

Wednesday, May 14, 2008

I'm from the government and I'm here to help you

It’s a joke among our kinfolk in the mountains of Virginia and Tennessee that when someone comes from the government offering help to look out!

I want to tell you about how the government helps you to care for your elderly family members at home.

Mom has forgotten how to walk. For some time she’d been having difficulty at times, which is why we moved her downstairs and none to soon. About three weeks ago we went to the doctor and by the time I got her down the front steps and into the car I was exhausted. We drove the short distance to the doctor’s office and slowly made our way the few steps from the street to the office and down the stairs there, which was difficult but not impossible. And we came home and I got her inside with difficulty but I managed it myself.

To help with her increasing infirmity, the doctor wrote a prescription for adult diapers. One of my friends had told me Medicare would cover it. Turns out that Medicare will cover diapers and bed pads if she is institutionalized and there is a medical support staff on hand to change them but they won’t cover them if you are caring for your mother at home. It could be worse, we are looking at less than $30/week for that but it would be nice if they were covered.

Two days after our visit to the doctor, I had to run some errands and Mom wanted to go with me. I got her into the car with some difficulty but I managed. She slept during most of the ride – that’s actually an improvement over her trying to tell me how to drive – but she was glad to be with me. When we got home, however, and she got out of the car, her body turned to rubber. She could not remember how to lock her knees into position so she could stand. Nothing I did was helping and before I could figure out what to do on my own, the neighbor’s gardener came running across the street and insisted he help us. I don’t know if I could have managed her on my own but it was too much for Mom who just went limp and he practically carried her into the house. She did not improve over the rest of the day and getting her into the bathroom and onto the toilet was a nightmare. I finally got her into bed and, collapsed.

The next day she came to my library/office and sat with me as usual. Her walking was unsteady, but better. Getting her into the bathroom was a little easier but that evening she had a major accident in bed. I was able to get her to the bathroom and we proceeded to do a bath as we had been with her sitting on a small bench in the tub. All went well getting her in and getting her clean. Then as I tried to get her out, we had a repeat of her legs turning to rubber. I was alone, of course, so I had to try to break her fall as she went down into the tub. After a struggle I got her back onto her bathing bench and cast about for a way to get her out of the tub short of calling the Fire Department.

These are the times I would call someone for help if I had someone to call but I have only Ed and he cannot be reached at work. He doesn’t carry a cell phone and I don’t blame him.

It finally occurred to me that I could wrap the bath towel around her under her arms and use that to get a grip on her wet skin. And that was how I lifted her main strength out of the tub and dragged her the perhaps eight feet to her bed. We both sort of fell on the bed and, when I caught my breath, I moved a chair around to the side of the bed and prepared it with a towel and hauled her over and into it. From there we did the usual after bath drying, applying of body lotion, powder, etc. I got her into her pajamas and she sat back wrapped in something warm while I stripped the bed, and applied vinegar to the wet mattress to neutralize the smell of urine. I got it partly dry with the hair dryer, dusted it with talcum powder made a makeshift rubber sheet from a yard trash bag and redressed the bed.

She sat up for a while in her chair in the bedroom but we did not attempt to transport her to the library even though it is only a short walk. After a while she told me she was tired and wanted to lie down so I put her back to bed.

The next morning her bed was dry and so was she but we kept the diapers on just in case. She went to the bathroom as usual, sat in her chair for a while but didn’t leave her room. She can look through the hall and see me at the computer and we can hear each other. And Emma has begun to take her afternoon naps with Mom. But dry beds in the morning didn’t last. After the third episode of changing everything from mattress out I went looking for a rubber sheet.

While I was getting it, one of the staff saw me eyeing the wheel chair and told me she could get one through Medicare. We looked at one that was really sturdy and would hold a hefty adult and one that would fold and fit into the back of the car trunk. That one seemed perfect. The doctor wrote a prescription and faxed it to the drug store. I went back the next day and was all set to bring one home.

However, only the $600 wheelchair is covered through Medicare and would only cost me $120. However that was big heavy-duty chair that doesn’t fold up. You would have to have a van with a lift to take her anywhere in the car. My thought had been to get her down the steps and then into the wheel chair and then from the chair into the car and after we got where we were going, she could ride in her chair. We borrow one to use in the mall and it makes it so much easier on both of us. But the one I wanted, was $250 and Medicare didn’t cover it. I decided to wait until after the 3rd of the month (social security checks). Another friend said, in the meantime, I should look around to see if I could find one used. Good idea.

I’m kind of glad now that I didn’t get the wheelchair because I don’t think we will have any use for it. I don’t believe Mom will ever leave the house again under her own steam, with or without assistance. In just over a week’s time, she has gone from mobile (if shaky), with assistance, to bed-ridden. The doctor told me it was coming but we are both surprised at how fast. I have not attempted the tub again. All I can manage is a sponge bath. The first we did in the bathroom but now she cannot stand for that either and I haven’t figured out how to hold her up at the sink and bathe her at the same time – I would need four hands.

She hasn’t gotten out of bed for 10 days except for when she has soaked the sheets. I start the day by changing her. I sponge bathe and pat dry the wet area, apply A&D ointment to prevent diaper rash, and Gold Bond powder. Then I wash her face and hands and try to get her to eat. Every other day I change her pajama top.

Today I replenished my supply of diapers. My friend, Carol, was right; the Affirm brand diapers, at Target, are much cheaper than Depends and they work fine. I have been reluctant to put soap on her since I can’t rinse her off like I did in the shower so I got some baby wipes. I’d been using the body lotion (not the best idea).

What I’ve learned might prepare me to start a mail order catalogue for eldercare products. Of course, Medicare would not cover them in order for you to be able to keep your loved ones at home. If everyone did that, it would put the nursing homes out of business. I just can’t do that to Mom. It would rob her of what little dignity she has left.

Tuesday, May 13, 2008

Depression as a side effect

I've heard about depression often being a by-product of serious illness and I've experienced it firsthand -- a little post surgery blues that dissapated when I started feeling like my old self again. But it didn't occur to me that it could be a side-effect of caring for someone who is ill. The possible causes are (1) the grind, because it does get old, (2) feeling helpless or overwhelmed and (3) realizing that your efforts are wasted is so far as making someone better is concerned. In the past few days I have discovered another cause of depression and that's knowing that time is short.

Several times a day, I try to get Mom to eat. She might have eaten a tablespoon of yogurt for breakfast. A little later I had some luck with ice cream. She might have eaten a quarter of a cup. Later I tried a milk shake and got maybe a tablespoon into her. Several times today she drank water or coffee but not much. She takes the straw in her mouth to please me but does nothing with it. I don't know how long this can go on. But I think, it can't go on for very long.

Sunday, May 11, 2008

Happy Mother's Day

I could not let Mother’s Day pass without a blog entry.

Over the past few days, Mom’s determination NOT to eat seems to be increasing. And I have tried everything I can think of.

Something that Mom used to make for me as a child, particularly if I was under the weather with a sore throat, was egg custard. So I made it for Mom. I thought surely she would eat that since it requires no chewing. But, alas, I failed to convince her to eat it. Perhaps I used too little sugar. I thought that, if she would not eat it, I would, rather than let it go to waste, and I don’t need the sugar. But I think I am grasping at straws for an explanation. She just didn’t want it.

Having had good luck with oatmeal one day, I tried it again. And I talked up some bananas I had brought home from the store because she used to like that on her oatmeal. She seemed pleased at the prospect but by the time I brought it in, she wasn’t about to eat it. Please to “open your mouth, Mom,” are met with a slight pucker that shuts down firmly on the bowl of the spoon before I could get it more than half an inch into her mouth. So I was only getting the most miniscule portion of a cereal inside and she “chewed” on that for some time before spitting it out.

I remembered that I had bought a box of baby oatmeal thinking that it might be something I could mix with baby food for our sick cat who died before I could try it. So it was there still in its seal from the store waiting for the next food drive and I thought “why not.” So I mixed it with water and heated it and then added some cream to cool it. It was thin enough to sip through a straw. I sweetened it and put it in a cup. I managed to get possibly a tablespoon into Mom through a straw. I’m thinking that once she figured out this was food, she decided she did not want it.

I’m desperate to get some protein into her and the last time I tried grinding cooked meat into very fine particles I found that it no longer worked. Part of the problem now seems to be that if it is barely warm, it is suspect now. I guess that says food. So I tried potted meat that I had brought from the store in hopes that it would work. I spread it on very thin slices of a yeast roll and she nibbled it but the second bite she just rolled around until she could spit it out.

I brought home some Eagle Brand sweetened condensed milk yesterday and put it in the blender with ice and banana and whipped up a lovely banana milk shake. She sipped about a tablespoon total over three sessions of coaxing her. If she would eat that it would be very nourishing but she complained it was too rich. I think maybe I might try with strawberries later today and add some milk to make it less intense. But I am close to my wit’s end.

This morning I got some coffee into her and talked up fresh local peas that I had bought at Harris's Market. She seemed enthusiastic but I don’t know if she will eat them. I am willing to puree them if that will help. I also got some local asparagus and strawberries. I just don’t know what kind of luck I will have. But that food processor has certainly been useful lately.

She’s lost her interest in flowers, too, and that’s not at all like her. We’ve had lots of rain and it beat down some of the hybrid iris that are far too heavy for their stems, so I cut them and brought them in and put them in a large vase in her room. The aroma is sweet and powerful. She acknowledged them after I called her attention to them but wasn’t terribly interested. I looked at Mother’s Day cards in the grocery store but couldn’t choose one – instead I cried as I looked at them. But I couldn’t let the day go unmarked so I brought her a pretty begonia with a bloom the size of a silver dollar shaped like a rose. She did admire it but her interest in flowers has faded.

I changed her top; I’ve left off pajama bottoms now as they just get wet. But I put a pretty new one on her this morning after her diaper change and quicky bath and somehow managed to haul her about a foot closer to the head of the bed so she is sort of sitting up. She drank her coffee but didn’t want food.

I have a new batch of things to try to day: fruit sorbet, a peach smoothie from Boost and the fresh veggies I brought home. But I don’t know if anything in my food arsenal will work. I sat beside her on the bed with my back in an awkward position for which I will probably pay later and shelled the peas and talked about them and how Mom Mom used to grow peas and asked if she wanted me to put dumplings in them. She finally decided that she might. So they are simmering on the stove and it’s almost time to add the dumplings. Wish me luck!