(posted by Greg)
Although we do not see dramatic changes daily, cumulatively the little changes are adding up to significant changes. Monica is weaker still. So, transferring her (i.e. from bed to wheelchair to toilet etc). is quite a bit more difficult now as she has very little leg strength. We need to be quite a bit more careful when doing this and we need to help her quite a bit more.
As you can imagine, this change makes many of the routine daily tasks (going to the washroom, showering, getting in and out of the car) more difficult. We are having to adapt our routine to accommodate these changes. For example, we have stopped using the shower. Instead, we give Monica sponge baths and, for the first time yesterday, used a lift (which a friend of Oma's has lent us) to lower her into the tub. It also means that we don't travel unless there are two of us to help Monica with the transferring. We find that at each stage we are learning little "tricks" to help us cope. I have noticed that, if I move her bad leg for her while she is being supported, her weight shifts and she then finds it easier to mover for her other leg.
Monica is talking less as well and is now quiet most of the time. I think that she finds it very difficult to verbalize her thoughts. We mostly use a lot of questions which can be answered by "yes" or "no" to communicate with her. Sometimes she answers those questions verbally and other times she nods or shakes her head. There are occasions when she tries to talk more (usually when someone comes to visit). She can also verbalize more if she is trying to tell us that she doesn't like what we are doing or that she is nervous about how we are transferring her etc.
It is still pretty clear that she is aware of what is going on around her. She still laughs if one of us stubs our toe or bumps our head and she often laughs when someone makes a joke or when something funny happens in a T.V. show. However, her short term memory is pretty bad. She is also sleeping more and from time to time seems to be in daze.The mornings are the best times for her. She seems to be brighter and more herself after she has had a good night's rest.
A lot of the caregiving involves mundane tasks- keeping Monica clean, comfortable and well-fed. Many of these activities are not in themselves satisfying. But overall, doing these things for her give us an opportunity to express our love for her and, I think, help us cope with what is happening. I also think that Monica feels comfortable, safe and secure being in her home and having the normal daily activities and interactions happening around her. Also, every now and then among the mundane moments, some special, tender moments occur which make our efforts worthwhile and which confirm to me my assessment of how she is feeling.
Daniel came home last Sunday and will be able to be here for several weeks. It is great to have him at home. Marley and I really appreciate the extra muscles. I am happy that he is having an opportunity to help us and to share some of those tender moments with his mom too. I think that having this time with Monica will help him cope.
Jesse is soon finished his clerkship in Duncan and we are expecting him to be back in Vancouver and around home after August 1st. He starts his fourth year in medical school with a 4 week rotation in family medicine in Inuvik starting on near the end of August but he should be able to be with us for about 3 weeks too.
Saturday, July 27, 2013
Sunday, July 14, 2013
Sunday, July 14, 2013
(posted by Greg)
Monica's leg strength continues to get weaker.Sometimes it is worse than others. But, so far we are coping reasonably well. We use the wheelchair in the house pretty much all the time but Monica is able to take the few steps which we need her to take in order to be able to transfer her from bed to wheelchair to shower to chair (and so forth).
For the most part Monica stays on the main floor of our house (avoiding the stairs) but we have figured out how to get her to the car so that we can still take her out.We still try to break up Monica's day with walks, picnics etc. and during the last week had a couple of nice walk.
We have a hospital bed set up in the dining room. Marley and I take turns sleeping nearby so that we can take her to the washroom as required during the night. Having Marley staying at home has been invaluable. When required there are two sets of hands and we are able to give each other breaks from the caregiving and still make sure that Monica is not left alone anymore.
Monica continues to get quieter (I think this is because she has trouble finding the words to express herself). She does however follow the conversations going on around her (or t.v.) and laughs at those jokes she likes (she still laughs if I bump my head). There have been some other changes. She is sleeping a bit more during the day and has had a couple of days when she has felt nauseous.
In the last week, we have had quite a bit of company. (Including a visit by Oma who took the bus and skytrain from Langley to our home in Burnaby). Monica seems to enjoy these visits and makes an effort to talk more with visitors and ask appropriate questions. Jesse was home for the weekend and we had some good family times. We are hoping that Daniel will be able to come to visit again next week.
Monica's leg strength continues to get weaker.Sometimes it is worse than others. But, so far we are coping reasonably well. We use the wheelchair in the house pretty much all the time but Monica is able to take the few steps which we need her to take in order to be able to transfer her from bed to wheelchair to shower to chair (and so forth).
For the most part Monica stays on the main floor of our house (avoiding the stairs) but we have figured out how to get her to the car so that we can still take her out.We still try to break up Monica's day with walks, picnics etc. and during the last week had a couple of nice walk.
We have a hospital bed set up in the dining room. Marley and I take turns sleeping nearby so that we can take her to the washroom as required during the night. Having Marley staying at home has been invaluable. When required there are two sets of hands and we are able to give each other breaks from the caregiving and still make sure that Monica is not left alone anymore.
Monica continues to get quieter (I think this is because she has trouble finding the words to express herself). She does however follow the conversations going on around her (or t.v.) and laughs at those jokes she likes (she still laughs if I bump my head). There have been some other changes. She is sleeping a bit more during the day and has had a couple of days when she has felt nauseous.
In the last week, we have had quite a bit of company. (Including a visit by Oma who took the bus and skytrain from Langley to our home in Burnaby). Monica seems to enjoy these visits and makes an effort to talk more with visitors and ask appropriate questions. Jesse was home for the weekend and we had some good family times. We are hoping that Daniel will be able to come to visit again next week.
Wednesday, July 3, 2013
Wednesday, July 3, 2013
(posted by Greg)
The MRI today confirmed what we suspected, namely that the tumour has grown (and is growing relatively quickly) and that the Temoxifen has not been effective. According to the oncologist, Monica will continue to get weaker, to have memory issues and to sleep more. He cannot predict Monica's life expectancy specifically but, when pressed by us, estimated a range of 2 to 3 months.
Based on the changes we have observed, this prognosis was not unexpected. Still, it is sobering to hear it from the oncologist. For now, we will be busy getting ourselves and our home prepared to provide more care for Monica as it is required.
The MRI today confirmed what we suspected, namely that the tumour has grown (and is growing relatively quickly) and that the Temoxifen has not been effective. According to the oncologist, Monica will continue to get weaker, to have memory issues and to sleep more. He cannot predict Monica's life expectancy specifically but, when pressed by us, estimated a range of 2 to 3 months.
Based on the changes we have observed, this prognosis was not unexpected. Still, it is sobering to hear it from the oncologist. For now, we will be busy getting ourselves and our home prepared to provide more care for Monica as it is required.
Monday, July 1, 2013
Monday, July 1, 2013
(posted by Greg)
Bittersweet times. Monica is still having lots of good moments but, at the same time, the progression in her condition continues to be obvious.
The good moments:
-several enjoyable visits with family and friend over the last week;
-Jesse was home for the weekend and we all drove to Langley for a visit with Oma (and got a bonus visit with Aunt Ida);
-a great picnic with Ingo, Oma, Jesse, Marley and me at Fraser Foreshore Park in Burnaby on Saturday- great table in the shade, bocci and good food [It was touching to see Oma interact with Monica. She took her for a private walk in her wheelchair,cut her food and generally did whatever she could to try to help Monica.]
- a long slow breakfast with our neighbour, Ed, yesterday
-today some good time with Jesse and Marley sitting around in the shade on our patio
However, she is significantly weaker. She is having much more difficulty moving around. This of course makes everything harder for us. We are using the wheelchair a lot even in the house and having to be more and more careful when she is moving. As well, she is struggling more often to express herself or make her wishes known. As a result she is generally quieter. We can't help but occasionally talk around her but we are frequently surprised when she reacts (with a joke or a denial) and realize that she is for the most part following (and enjoying) the conversation.
The prescription/supply of Temoxifen runs out tomorrow. We had considered stopping it but, in the end, elected to finish it off. Monica has an MRI on Wednesday and a follow-up appointment with the Oncologist later that day. I spoke with their office about this schedule and, again, was unsure if we should bother. We are going to go ahead with this appointment as it will perhaps allow the Oncologist to give us a better prediction of what to expect (symptom-wise) and a time-frame. This would help us with some planning and with the decision-making which we will inevitably face.
Monica is still not in any pain and is not having some of the common symptoms (headaches,seizures etc.) that accompany brain tumours. If you ask her "how are you?" , her reply is the same as it has been all along - "I'm fine!"). She continues to be peaceful and (fortunately) good-tempered. She is still patient with our teasing and bad jokes and occasionally surprises with a zinger of her own. I feel extremely lucky that she is this kind of person/patient.
Bittersweet times. Monica is still having lots of good moments but, at the same time, the progression in her condition continues to be obvious.
The good moments:
-several enjoyable visits with family and friend over the last week;
-Jesse was home for the weekend and we all drove to Langley for a visit with Oma (and got a bonus visit with Aunt Ida);
-a great picnic with Ingo, Oma, Jesse, Marley and me at Fraser Foreshore Park in Burnaby on Saturday- great table in the shade, bocci and good food [It was touching to see Oma interact with Monica. She took her for a private walk in her wheelchair,cut her food and generally did whatever she could to try to help Monica.]
- a long slow breakfast with our neighbour, Ed, yesterday
-today some good time with Jesse and Marley sitting around in the shade on our patio
However, she is significantly weaker. She is having much more difficulty moving around. This of course makes everything harder for us. We are using the wheelchair a lot even in the house and having to be more and more careful when she is moving. As well, she is struggling more often to express herself or make her wishes known. As a result she is generally quieter. We can't help but occasionally talk around her but we are frequently surprised when she reacts (with a joke or a denial) and realize that she is for the most part following (and enjoying) the conversation.
The prescription/supply of Temoxifen runs out tomorrow. We had considered stopping it but, in the end, elected to finish it off. Monica has an MRI on Wednesday and a follow-up appointment with the Oncologist later that day. I spoke with their office about this schedule and, again, was unsure if we should bother. We are going to go ahead with this appointment as it will perhaps allow the Oncologist to give us a better prediction of what to expect (symptom-wise) and a time-frame. This would help us with some planning and with the decision-making which we will inevitably face.
Monica is still not in any pain and is not having some of the common symptoms (headaches,seizures etc.) that accompany brain tumours. If you ask her "how are you?" , her reply is the same as it has been all along - "I'm fine!"). She continues to be peaceful and (fortunately) good-tempered. She is still patient with our teasing and bad jokes and occasionally surprises with a zinger of her own. I feel extremely lucky that she is this kind of person/patient.
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