July 31

Yesterday Mom was the most lucid and calm that I have seen since before she went to Jubilee. It was very nice. When I commented to the nurse her reply was, "Enjoy it." So I did. Mom was in bed for the entire time from when I arrived at 5PM until I left. She even watched the news and Jeopardy, shades of the past.
I guess her pressure sores are getting worse. She did not eat anything again.

July30 - the month is almost over. What will August bring?

Lor and Emily visited Mom several times yesterday and Lor brought dinner from home. We went into the Sally Pearson room which is outfitted like a home family living-dining room with table, easy chairs, complete with fireplace and piano. It is meant for private birthday celebrations or Christmas celebrations for one or two residents as opposed to the main dining room where celebrations for all residents would be held.
We thought that Mom might be more comfortable eating there with us but she just wanted to go back to her room while we ate.
She is now being transferred by overhead lift because she is so weak. She has lost so much weight that her bones are protruding in her back and neck and she has now developed a pressure sore on her back. Every day we are finding out that there are more nasty things to deal with. Mom says that the pressure sores don't bother her but she is on the pain pump.
Dr Sawyer, the physician, is coming to see Mom on Thursday after I get off work so we will see what comes of that meeting.
The nurse on duty last evening, Ann, is so good. She was telling me that Mom seems to have turned another corner and is becoming calmer and more accepting of life in a care facility. I truly hope this is the case.
Lor is being dumped in at the deep end and I am feeling some small bit of relief!

July 29

My impression is that Mom is deteriorating all the time. Lor and Emily arrived yesterday about 6 o'clock. Prior to that Mom needed to uset he commode and I was going to help her but she just seems so frail that I called an aide. She was telling me that we shouldn't lift Mom on our own unless she was quite able to help, offered the ceiling lift. I told her that Mom had been OK the day before and we proceeded in the old way. Mom managed quite well.
As always the care aide left to attend to others while Mom did her part. I thought that I could likely get Mom up again on my own after the ease of transfer to the commode. When I tried to lift her under the arm she just couldn't help at all and was a dead weight. So I rang for Trudy and she came with another aide, Lynn. They considered using the lift but decided to give the underarm method a try. Instead of gently lifting Mom's arm, Lynn gave a great yank and hurt her back. Last I heard she had gone to the hospital. They then used the lift to help Mom up, found a huge pressure sore on her bum and decided that Mom should go back onto the bed until the nurse could have a look. Mom sure wasn't happy about that. It meant that when Lor and Emily arrived that she wouldn't be up in the chair and it definitely meant no drive!
Now I think that I have broken a care aide!
We visited for a while, had our dinner then Lorraine arrived to spend the night. Mom had almost decided that she doesn't need anyone to spend the night. What a blessing that would be - for me! Making a schedule just adds that little bit more to my day. But if Mom can be content it is not a problem.
Today Lor is going to visit, then come home and make supper and bring it back, we'll eat and then I'll come home. If anyone stays tonight it will be Lor and Emily.

July 28

I missed this space yesterday but will catch up today. Mom was able to transfer to the car for her ride, with quite a bit of difficulty. I wonder how long it will be safe to even try. Yesterday when I was with her in her room and she was lying on the bed, I played some CD's and she started calling out for Nellie and then for Alex.
Lor and Emily arrive today and we shall see what this week brings. Hope Jimmy's night went OK - he's the first guy to stay! but closely related.

July 26

I decided not to take a phone in to Mom's room because she won't talk on it anyway. As well the ringing of the phone in the room next door really annoys Mom because she can't answer it. Pretty well everyone who goes there has a cell or can use Jubilee's phone and the phone will be put to better use here at home. So I called Telus and they are switching Mom's phone back here on Tuesday. So anyone who has tried to call her in the past few days would just have reached endless ringing. Should be up and running by Wednesday at the latest.
This afternoon I was helping Mom transfer from the commode to her wheelchair and she sank to the ground and had to be helped up with a lift so I hope that she will be able to transfer again when she is stronger and more alert or else this will mean the end of our drives that she so enjoys.
At the moment she is listening to one of her Rod Stewart CD's that I put in just before leaving to pick up my supper. I had hoped that we could drive out here for me to eat but am almost afraid to try.
I will be staying with her tonight and Jimmy has offered to stay with her tomorrow.

July 25

Tomorrow it will be 2 months since we received that terrible diagnosis. What we have been through in that short time!
Yesterday Mom was very sleepy(drugged). I spoke with her doctor in the morning and had some questions for her. The doctor was kind enough to make a visit that afternoon, arriving shortly after I did. She examined Mom with the idea of having her come home and is now going to make some inquiries on our bahlf to help make that happen.
Then Mom and I went for our usual drive. She was so drugged that she was almost unable to assist in any way.
Came home to a lovely surprise - Carol had baked cinnamon buns for her family and shared those along with a pretty bouquet of flowers. Rather than my resolve to eat something nutritious and colorful - like a salad - I chowed down on one of them. It really hit the spot. Nutritious can happen today, maybe.

July 24

Life is taking another turn - Mom now wants to come home. When initially diagnosed she wanted to stay in care during her illness but now things have changed. I don't know that this is anything more than drug-induced paranoia or the combination of some of her caregivers and their other responsibilities within the facility, and Mom is not really forthcoming. This may be partly due to her inability to remember and articulate some of the problems but the only thing that she said is that they are pushing religion at her. Later on in our visit when I was gathering her laundry I found one pair of pants was missing. When I mentioned this to her she told me that she had gotten mad, torn them, and thrown them in the wash. That was her only explanation.
So: frustration - paranoia??????????
Home could be even less fun than the facility.
On the up side we had a much better visit yesterday and I have arranged for people to stay with her until Saturday so I can have a night off this weekend.
Yesterday I was so tired that I took the afternoon off and came home and slept. It was great and now I need to do that again today -ha ha.

I have decided not to take a phone in to her. She isn't asking for one and she won't talk to anyone and I can manage with my cell phone while there. The only time that she uses a phone is when she is very agitated and then she gets the nurse to call someone. I think that my work phone might take a beating if she has a phone and can figure out how to work it. So while I have shared the phone number with you, there is no phone attached and you will receive just ringing if you call there. I may actually ask Telus if they can reverse the change without charge. All right, quit laughing!

July 23

Yesterday Mom was pretty much the same and I am getting worn out. I am not very much help to her lifting her spirits. I can drive her around and rub her swollen feet but at the same time the tears are streaming down my face and I'm sure that's very upsetting to her but her medications don't allow her to show that.
Lorraine was staying with her last night and Mom was sure looking forward to that. Lorraine will notice quite a difference from a week ago. Mom has some very good friends and Jane is going to see her pretty well every day. Lor is coming back again this weekend. I will remember to take a telephone in today but before I install it in her room I will ask the nursing staff if they think it is a good idea. At this point it may not. I don't think that Mom will talk on any incoming calls and will only use the outgoing line as a rescue line! She always wants me to phone anyone who is supposed to be coming to find out why they aren't there yet - and that's usually about an hour before they say they will be there. And then every 5 minutes after that.

July 22

Yesterday Mom was very sleepy which is much easier to take than anxious but at the same time makes me cry more. She was a bit anxious because the person coming to stay with her last night is a hospice worker that she has never met and didn't arrive until 2200. So I didn't stay very long after Janet arrived and hope that all went well.
Mom's feet are swelling significantly and last evening she was complaining about her neck being swollen. Partly due to heat, perhaps. Most likely not.

July 21

Mom was quite angry with me for leaving yesterday morning and it carried over when I was longer than she thought I should be coming back. So yesterday was another tough day. The nurse on duty-Ann-told me that it is often the case that the sufferer turns on the one who is closest to them. That makes it easier to understand but not easy to take.
It is over 30 degrees and Mom wants to get out each day. I certainly can't blame her but it sure limits what we can do when she feels the heat as much as she does. So yesterday we tried to go to Lakeside Park to sit in the shade but it was way too warm. The car's air conditioning seems to be the next best bet so we drove to Trail.
Then Shirley arrived to stay overnight with her. And I still felt badly when I left.

More photos

These cell-phone photos are not too bad! I didn't want to forget to take my camera and then miss those hydrangeas when they are so lovely. The open window directly above the fountain is in Mom's room and we can hear the water. Her room faces southwest so we have to have the window and curtain closed most of the day but it's sure nice in the evening. The hallways are air-conditioned but not the rooms, most of the elderly and infirm are cold most of the time. Mom's meds have made her warm so I freeze most of the time now!
This photo I took from inside Mom's room when we saw one of the two resident cats having a drink. I tried running around to the outside but could never get there in time. When Mom was a member of the Ladies' Auxiliary for Jubilee Manor, they raised funds for some of the furniture that is now on this patio, so she is getting to enjoy it(well, if you can call it enjoy).

July 20

This is the garden in the courtyard patio of Jubilee Manor. Mom's window is the farthest one away, she has a lovely view. These hydrangeas are at their peak right now. From my very limited knowledge of plants there are 4 kinds of hydrangeas there.

There is Mom's foot and elbow! She's not keen to have photos taken right now and I sure can't blame her.

Stayed overnight again last night and now Mom was extremely anxious when I was leaving. I don't know if the amount of comfort that she feels from my stays are worth the amount of anxiety when I leave. Or if her anxiety level is from moment to moment - actually that's what I feel is more likely.

Every day there are more staff that she knows and enjoys from the old Mt St Francis days. Only Mom is in a different capacity now.

Yesterday afternoon we went for a drive and went to the Frog Peak cafe at Crescent Valley where they sell pretty incredible panninis and Mom even had about 2 bites of one.

I'm at home, ostensibly doing housework but all I want to do is collapse.

July 19

Mom's anxiety level is not allowing her to relax enough and for some reason she is terrified to stay alone at night. When she doesn't know who is going to stay with her that night she is totally consumed with her fear. Lorraine has been kind enough to stay on her hide-a-bed 2 nights and Patti, a nurse who is currently on sick leave from Jubilee, has stayed with her one night. Last night it was my turn and I'll be there again tonight.
Several people have now told me that this is quite common - the things one learns when encountering something new! I have now contacted the Hospice Group who have a list of folks who will stay. I have no idea if this will ever resolve into trust of the staff at Jubilee or if she just thinks that she is staying at a motel somewhere - like she did this morning. Any friends who could manage an overnight would certainly be welcome.
Today is the first day that she went to the dining room for breakfast - I helped her dress. Unfortunately there was no one but her at her assigned table. Making friends would be so good.
Things will also be better once she gets her phone installed because she may not feel quite so cut off. I just hope that she doesn't call me too often.

July 18

Mom seems to be getting a bit stronger and even had her hair cut yesterday. She is encouraging visitors but doesn't have strength for vey long visits. I am trying to find some clothes so that she can join in some of the activities because she doesn't want to be in the lounge in a nightie - hospital nightie at that. But with the pain pump attached to her abdomen, it is a bit of a challenge. She is such a gracious, grateful person that her words about the clothes I chose to take up were; "You made such a wonderful selection."
I'm really hoping that she can get into some of the activities there and will rely on me a little less. I have set a pace that I can't keep up and in her heart of hearts, she knows this. However, her level of anxiety doesn't allow her to settle for less. We shall see.

July 16 - again

This is the view from the Emergency Department ramp that I would take Mom to see in her wheelchair in the evenings when she was still in the hospital. I know that she's not in the hospital any more but just had to share this lovely view with you. This is looking towards our house (northeast).

July 15 - the move

Today was such a hard day. Mom knew that we were going to Jubilee Manor and is resigned to that but when I went up to see her at my morning coffee break she was rather sombre and her comment was, "So this is what it's come to".
I had arranged to have the afternoon off so was able to be with her the entire afternoon and most of the evening too. I had the oxygen concentrator in the car when I went to work this morning (thanks Terry) so we borrowed an oxygen tank from the hospital for the drive over to Jubilee. Christa was up visiting Mom when I went upstairs and she had enough time to help with the move and to stay for a while for Mom's sake. When we arrived we were greeted by many of the staff that Mom recognized from Mt St Francis in Nellie's time. The nurse Kim came and did the intake and then we realized that there were a few things that we needed from home. I think that will continue for a few days, if not more. After the intake interview Mom wanted to come home for a drive and pick up the things that we needed. I think she just wanted to leave.
During the ride we met up with Jane and her family and invited her to come up to view the room and have a visit.
Then Mom asked me if I would stay overnight with her (there is a hide-a-bed in the room). I felt awful but I refused. I just do not have the energy to stay with Mom and no sleep all night. And I do not want to start and then have to stop once she is used to that. I really think that she would never be comfortable alone there if once I started. Then Mom asked me to call Lorraine who accepted and will stay there tonight and tomorrow. I don't know where we will go from there but time will tell.
Tough, tough day.

July 15

Today's the big move. I think that Mom is pretty anxious about that as am I. We will be going to Jubilee Manor at about 1300 and I have the rest of the afternoon off if needed.
Since Mom has realized that she can go out in the car and escape the jail cell that her hospital room has become to her, she wants to go out every day. Last evening when I went upstairs after work she wanted to head out. So off we went, surprising Jane McComb and family at their celebration of Jane and Shannon's birthday. Then we came to our house and I made tea and salmon sandwich and we had a little time in the driveway. It's actually quite pretty but we have never sat there before as the deck seemed to be the place to be. Terry and Judy both came over to say hi.
Mom is very weak but she has been in bed for 3 weeks and is eating very little. If we can get her to eat more and she decides to spend more time out of bed her quality of life should improve a lot.

July 14

Yesterday was tough in the morning for Mom but by bedtime she was feeling better. In the morning I prepared to go for another road trip, just in case she was up to it. When I arrived at the hospital they were doing unspeakable things to her and she was totally wiped. When she had a nap in the afternoon I came home and did the same. In the evening we went back out around the hospital in the wheelchair, searching for the elusive cool breeze. During our moments of discussion we talked about Mom going to Jubilee Manor and have pretty much decided that will be our course of action. That will likely happen today after I finish work.

July 13

These photos are of the wild sweet peas that are currently blooming on the bank beside the road between here and town.

Yesterday when I went in to visit Mom she asked when we were going. So off we went again, this time out the lake to Balfour. She really enjoyed the trip even if she was quite groggy all the way. I rather wonder if she feels like she is in jail in that hospital room.

After we came back she had a nap and I came home, then returned after supper when she again was interested in going out. It was after 1900 so I just took her in a wheelchair outside the hospital and then sat in a nice spot where there was a breeze. But she was so tired after all the time out of bed that she didn't have enough strength to get back into bed without major help.

July 12

Yesterday was a much better day - oh the ups and downs of it all! Perhaps the bad day on Thursday was due to Lor and Emily's departure. They made it home safely by supper time last evening.

I was rather aprehensive about going into Mom's room yesterday morning but when I arrived she was sitting up waiting for me and her breakfast. What a pleasant surprise.

When I went up at lunch time the community liaison nurse met me in the hallway on my way to Mom's room, wanting to discuss the transfer to Jubilee Manor. This was the first I had heard of any transfer. She had been in to see Mom and Mom had asked that I be included in the discussion.

Since the amalgamation of facilities under the Interior Health umbrella there have been some changes in bed allocation and while Jubilee Manor used to be only an intermediate care facility with residents who could manage their personal care and make their way to the dining room for meals, they now have a few palliative care beds with pretty well all of the capabilities of an acute care hospital except perhaps IV medications.

All of the rooms are private ones. And one of the biggest draws for Mom is that she knows most of the staff from the days of visiting Aunt Nellie at Mount St Francis. After the Mount closed most of the staff transferred to Jubilee.

So we had a discussion and Mom was fairly agreeable with the move and she was interested in seeing the room that she would have . I told her that I could go up tomorrow and take some photos of the room for her. After Lois (the nurse) left, Mom showed her level of anxiety by asking me if I could have the rest of the afternoon off to be with her. That was arranged and when I returned to her room she wanted me to help her see if she could walk a few steps. I think that this was due to the fact that she would want to be able to move around at Jubilee. We did that and then I suggested that, if she felt up to it, why not go and take a look at the room. To my astonishment she agreed. Rather than give her any time to change her mind we made the arrangements.

I put her into a wheelchair and took her to the lobby and went to get my car. When I was wheeling her to the door Valene, one of my co-workers, offered to help. As we were putting Mom into the car she showed a bit more of her anxiety by asking Valene if she could come too. Mom said that while she felt confidence in my abilities she would just feel more comfortable with 2 people along.

Valene, bless her heart, is the Office Services Supervisor and has the ability to take the time and agreed. Now I know that she has more work than most 2 folks there but her heart is just that big!

Away we went - Jubilee Manor is a couple of miles from the hospital, right in town. Mom has been involved with the auxiliary and knows the facility but not really the rooms. When we arrived we were greeted by several staff that we know, the room is quite nice.

On our way back to the hospital I asked Mom if she would like to take a drive out towards our house to see the spectacular display that the wild sweet peas are creating right now. I suggested that we could drop Valene off at the hospital so that she could get back to her ever-increasing mountain of work. Mom invited her to come along and again she agreed.

This little trip only added about 10 minutes to the outing but Mom was pleased. I think it made her feel a bit more normal.

The move would take place on Monday as Mom is receiving IV antibiotics each day until then. And she has not given a definite decision at this time. But she has had an outing!

She was pretty tired when we returned to the hospital so I went back to work while she slept, then more of my incredible neighbours invited me for dinner. The only thing is that I have to eat and run back to the hospital. That certainly puts the pressure on them but I truly enjoy the break. And there were the lovely flowers that are at the top of this post waiting for me when I got home from work.

I slept very well last night.

Today is the next day.

July 11

Lor left yesterday and called from Quesnel last evening. They were having a good trip and are now more than halfway home. The driving is much easier once you head north on that road so they will just have to wait as the miles and kilometers click past.
Dr Boyd added an antibiotic to fight an infection and re-arranged Mom's pain medication to a steadier level that is administered more often. Unfortunately this is the medication (dilaudid) that increases the anxiety level. Just as I was finishing work Mom's nurse called to ask when my shift ended, as Mom was getting to be very anxious. So I went upstairs and she was fairly anxious but hardly able to carry on a conversation due to the dilaudid. Soon after that Dr Landry, her internist came to visit and decided to add to the ativan to keep the anxiety at bay. Mom agreed. She is eating very little but the highlight of her week was the fresh strawberries that Shirley and Rob Kammerzell brought for her. After she finished off the strawberries they gave her some more ativan and I came home for supper. When I returned about 1845 she was sound asleep and stayed just that way until I left after 2000. The nurse tried to rouse her to give her an oral medication and she would just open her eyes and then go back to sleep.
Dr Boyd called to see how she was doing and told me that the next step is to balance all of the drugs and the pain and anxiety. So we will see.

July 9

Mom is either anxious or sedated and neither is good. Today we told her that we were invited to the neighbours' for dinner and then after work she asked me to stay with her and I agreed. About 1730 she remembered that we had been invited out and insisted that I go. I told her that I would take my cell phone with me should she want to call. She couldn't remember the number and when I returned from the neighbours' she had called once on her phone and once on mine, less than an hour after I left her. That haunted voice on the answering machine will be with me forever. Lor and Emily are leaving tomorrow so Lor went back in tonight to spend a last few minutes with her.

July 8

Yesterday Mom was extremely agitated and anxious and that is now affecting what little quality of life that she has. So I asked the pharmacist if there is any way to adjust her medications to allow her a little peace.
Emily received a phone call from her Dad to say that he has now accepted a job in Grand Prairie and is leaving today. Poor Emily won't be able to say good-bye to him except on the phone so we had a sad little girl here last evening.

July 7

Wanda left yesterday morning and phoned to let us know that she arrived safely. Mom said that she had a terrible day, including a panic attack. I wonder if it had anything to do with Wanda's departure. Lor tried in vain to ignore her birthday.
In the evening Bonnie came over to invite us to their fire in the back yard. It was a nice relaxing time.

Today we had another trip to the airport - to see Kevin off this time. Mom seems to be more agitated. The doctor who is doing weekend call for Mom's family physician came to see her and decided to have a chest xray and some bloodwork done today because Mom seems to be having more difficulty breathing. After the results were in Mom and I had a road trip to Trail by ambulance for a spiral CT to see if she has a blood clot in the lung. We still don't have the results.
I've never ridden in the back of the bus before. Sure is bumpy! We were planning to have borscht for supper that Pam had made for us. I was anticipating it all day! The ambulance left for Trail at 1730, just before I would have left to come home for supper. By the time that I reached home at 2115 my taste had changed to tea and toast. So I get to have the anticipation again tomorrow.
Kevin also phoned to let us know that he arrived home safely.

July 5

Yesterday Kevin flew in for the weekend as a surprise! When he showed up at the Xray counter it made me cry! As well as one of the ultrasound techs who became caught up in the moment. Mom was happy to see him, was sure that I was in on the surprise.
Most of the day yesterday Mom was not good but in the evening she perked up a for a little while - not even half an hour. Wanda is spending a lot of time with her because she is leaving this morning.
Today is Lor's birthday and yesterday we were reminiscing about our trip to England in 1996 when we celebrated her birthday with tea at the Ritz hotel. We sure created some good memories on that trip.

July 4

Wanda made pizzas and we took them up for dinner with Lor and Emily after they arrived. They had a pretty good trip in spite of the heat.
Yesterday we had a family meeting which included Mom, Lor, Wanda, Dr Boyd, Dave Scanlan (social worker), Lois Pierik (community liaison nurse), Liz Edwards (pharmacist) and Marie-Claude(one of Mom's nurses) as well as myself. It was discussed that Mom may have some time left and how would she like to spend it. Now that her pain and nausea are under control we start to work on the next obstacles and there is a never-ending list. There was discussion of making arrangements for Mom to come home which would include hospital-type equipment, home care nurses, home support workers, hospice volunteers. Mom is rather anxious about this so it may not happen. One other option is to have her placed in a long-term care facility so that she can have round-the-clock care. At the moment there is about a three-month wait for placement. Since no one can say exactly how much time she has, or how much of that time might require acute nursing(IV's, etc) this is certainly in the picture.
Mom has now the information to make some decisions.
Being Mom, before everyone got to her room for the meeting, she asked Wanda if perhaps we should be serving tea and coffee!
After the meeting, which lasted about an hour, Mom was totally exhausted.
Jane and Brent were kind enough to have us for dinner last evening. Wanda is only here for one more day.

July 2

Mom had a pretty good day yesterday! She was more awake than any time since she has been in hospital. In the afternoon we left her to sleep and when we cam back she was sitting up doing a crossword puzzle. Then after supper we stayed with her until 9:00 PM. She also went for a wheelchair ride down the hall.
Mom and her brother Tom have always had a joke about survivng June. 5 of their 10 siblings died in June and early in July when one calls the other they always comment that they have made it through another June. But when I suggested that she has 11 more months to go, I got the "look".
Lor and Emily are coming back for another visit and they called from Williams Lake last evening and will be here for a late supper tonight so I hope that Mom is well again today.