Where does the time go?

I wrote a reply last night and it disappeared into the web. I was too tired to recreate it. Then today got worse.

Julieanne, it is hard for people to talk about dying. So it is their discomfort that is foremost in their mind also their discomfort with crying. About all you can do is tell them what you need. Also Hospice is there for the family and part of what they do is help the family understand what is happening. I had conversations with 3 nurses today who each in their own way was preparing me for the inevitable. Go ahead and cry all you want.

Lorrie, I am so glad Bob is feeling better and is able to give you a hand. Cherish every moment.

My sister is here until Sunday. I will be able to get to Motor Vehicles and get my handicap placard.

Dick's outing yesterday sapped his strength and he was in a lot of pain last night and this morning. His lungs have more fluid in the and it is hard to get enough oxygen to them and his brain in part because he is also severely anemic. His hemoglobin today was 8.2 and his Oncology nurse is concerned that a transfusion would made things worse by introduction too much fluid into his system. We don't need to make a decision now as he could not get one until next week anyway. I am not sure what would be best. As usual what can help can also harm. It has been a day of tears. Julie

Wow Julie- you sure do have your hands full- I'm exhausted just reading about your day. I wish I had some words of wisdom/comfort for you.

We have hit a calm period here at our place. Bob is feeling quite 'well' at the moment- even the hernia isn't bothering him too much. He finished his Chemo a couple of weeks ago, there are no appts. until the new year when he will have another scan to see what is going on.We are keeping the constipation under control & knock on wood he hasn't had a UTI in a couple of months. We are keeping our fingers crossed that it will be a quiet, uneventful Christmas.

Because he is feeling quite well, he is doing some work around the building- it's been a big help to me as things were getting away from me. We have snow now & of course he won't be able to shovel so that's my job. I need to wear a support band on my arm as it just aches from shovelling but that's OK.

It's quite a change from a year ago- quite a wonderful reprieve- I pray it lasts awhile but am realistic enough to know that it will get bad again.

Have a wonderful Thanksgiving & my hat is off to you
Regards, Lorrie

Julie, It made me tired just to read your post. My husband went through chemo this spring and summer and could not do a thing. He couldn't even stand the t.v. on or noise. I wish I could make it easier for you. Hang in there.



Julieann. My Mom spent the last 3 months of her life in the hospital, we didn't know that she had aready spent her last Christmas with us. A loss is a loss no matter when it happens , she is your Mom and you can feel anyway you want. It has been thirty five years for me since she died and I want her more now . I guess because my husband has been sick and I also have bc. I believe I will see my Mom again and I can't wait for that day. You guys are both in my prayers. love from Rocky

Oh Julie. I know this takes a physical, emotional and mental toll on you. I cannot imagine being a sole caregiver day in and day out. But, what else can you do for someone you love.....which I know is why you do it. Nothing I write can help. However, I am always willing to talk and/or listen. My situation is different yet the same. I am not Mama's sole caregiver, so it is not the same for me. However, I do understand some of the things you are going through. Mama also cannot do more than one thing at a time. Any sequence is too much. She says sometimes she feels like a child that cannot remember more than one thing at a time. She has stopped going out of the house even though I think she is not quite as advanced in this as Dick, and does not have the other illnesses along with the cancer. I have had a terrible breakdown today and am not sure if the swelling in my eyes will ever go away. I am certain this is her last Thanksgiving and CHristmas. However, when I try and talk to my husband or others about that fact, they say things like.."Now, you don't know that." or "Well, it's ok." Well, I DO know that and no it is NOT OK. Sometimes I just want to be sad and don't want anyone to try and sugar coat it or make me feel better. Sometimes I just want a realistic conversation about the fact that my mother is dying and it isn't going to be that long until it happens. Can you relate?

It is amazing how much time I spend taking care of one person. Today for example, it took from 10:30 to noon to get Dick ready to get up. An hour for him to get dressed and out to the dining room. He tried to eat but really did not eat very much. Then I go turn the van around so he can get in the passenger side. I put the step stool in front of the passenger side door. Then I adjust the screen door so it will stay open, the front door I hook an exercise band around the lever on the door and the other end to a cabinet so it will stay open. I fill two bottles of water to take with us and take them out to the van along with my purse and Dick's diabetes kit. Then Dick can take his wheel chair out the front door, down the ramp, and along the pathway to the drive way. He stops the wheel chair at the door, I take the oxygen tank off the back of the wheel chair and put it in the van, I give him a hand up out of the wheel chair and he steps up on the stool and into the van. I take the wheel chair around to the back of the van and attach the hoist, press a button and the wheelchair is lifted up so I can push it into the van and then push another button and lower it to the floor.

I takes 45 minutes to an hour to get to the facility where the lymphedema massage specialist practices. I have to find a place to park where there is room on the passenger side for a wheel chair. Today all the handicap spaces are full. I get the wheel chair out and take it up to the door, he hands me the oxygen tank to put back in the holder on the wheel chair, he gets out of the van and into the wheel chair. Thankfully today we are on time. Twice I had everything ready to go on time and then he had to go to the bathroom and nothing can hurry that procedure. The session is 45 minutes and really he gets about 35 minutes of massage time. As a treat we stop at a near by Gelato place where I go in and pick the flavors and take our cups of gelato out to the van where we eat them. Then back home. From driveway out to driveway in we took 3 hours and 15 minutes.

I have spent the whole day so far taking care of Dick. I think there is a silent negotiation between caregiver and the loved one. I try to care for him in the way he wants but I also want to do some things the way I would like to do. So we are dancing around several issues about how things are going to be done. He feels like I am trying to rush him and I feel like he is the slowest moving person in the universe however if I leave him to do something he just sits. All of his diseases have taken a big toll on his mental acuity. I cannot give him a sequence as he gets confused. I have to do everything one bit at a time. This gets worse when he runs a fever and he ran a fever 3 days in a row

He has one more massage therapy appointment. I think I won't make any more for him as they also drain what little energy he has. His pulmonologist wants a chest x-ray which he can do on a walk in basis.

I bought a new TV for the bedroom from Amazon last night so he can play video games on a screen where he will be able to read the print. Our current TV is fussy enough that we can't read anything on the screen. I hope he will be able to get some enjoyment out of it. I know my Christmas he won't be able to get out of the house. Our son and family will be in Tucson over Christmas so I will ask that they come here to visit and I can fix a couple of meals.

I wrote this out because I'm trying to figure out how I can squeeze out some time to get on the forum. I wind up online late in the evening when no one else is on. My days are full these days.