(posted by Greg)
Our home is pretty quiet today. Jesse left for Inuvik on Saturday. Daniel and Mollie left for Boise yesterday morning. (Both boys found it very difficult saying goodbye to Monica). This morning Marley started her 2nd year in med school. So, as I am writing this blog, it is just Monica and I in the house and it is pretty quiet.
The Homecare service now comes twice a day. Once around 9:30 when they give her a sponge bath and get her ready for the day. Only one worker comes so WCB rules limit how much they can move Monica alone and they are not allowed to do it with me. So, I do the transferring for them and they help with the wheelchair etc. They come back between 8 and 9 in the evening to do the same and get her ready for bed.
Marley and I are planning that we will give Monica a proper bath in the evenings when Marley is home.
I have arranged for a service, Nurses Next Door, to come for 4 hours in the afternoon Monday to Friday. They will help me as required (but have the same WCB restrictions re lifitng) during the day. Monica has a nap most afternoons. So, I will have them watch her or keep her company while I do my shopping and errands. It will also allow me to attend at the office a small amount for some meetings and signing cheques etc.
Monday, August 26, 2013
Sunday, August 18, 2013
Sunday, August 18, 2013
(posted by Greg)
For the past two weeks Monica's condition has remained pretty much the same (and, in some ways, thanks to the steroids, better). The extended visit by the kids has been been good for all of us. I think Monica is enjoying the activity (and affection) that surrounds her.
Last week we kept the long-arranged appointment at G.F. Strong for the botox treatment. I wasn't sure what they could do or would be willing to do for Monica given her situation. However, I am very glad that we kept the appointment. They (it is a team of a dr, occupational therapist and physiotherapist) were very empathetic with Monica and gave her a series of injections to make it easier and less painful for us to both transfer and clean her. They also had some useful suggestions for us as caregivers regarding how to use the muscle relaxants and how to transfer her.After only a few days, we are noticing some beneficial effects. They also made it clear that we could come back for a further injection if necessary.
On Wednesday, Daniel's daughter, Mollie, joined Daniel (she had been with her mother in Alaska for the summer). Daniel and Mollie arrived home that night just as we were putting Monica to bed. The smile on Monica's face when she saw Mollie is something that I will remember for a long time.
Mollie has brought a different dynamic and energy level to the house. Monica is clearly enjoying watching Mollie and interacting with her. Mollie is very gentle with Monica and wants to help with everything. So, Grandma's daily spa team now has a 5 year old helping with her bath and the shampooing of her hair (not to mention operating the bath lift).
I am becoming more and more aware that I will soon need to make alternate arrangements to help me with Monica 's care. Jesse has to go to Inuvik for a month starting August 26th, Daniel needs to take Mollie back to Boise for kindergarten and Marley will be starting classes again on August 26th. At this point, the Homecare Service is going to provide help in the mornings and evenings with dressing and sponge-baths etc. Marley and I will probably give Monica a full bath in the evenings every other day. I haven't yet made a final decision but I think that I will hire someone else to help me with Monica for a part of each day (So that I can shop, exercise, pop in to the office etc.)
For the past two weeks Monica's condition has remained pretty much the same (and, in some ways, thanks to the steroids, better). The extended visit by the kids has been been good for all of us. I think Monica is enjoying the activity (and affection) that surrounds her.
Last week we kept the long-arranged appointment at G.F. Strong for the botox treatment. I wasn't sure what they could do or would be willing to do for Monica given her situation. However, I am very glad that we kept the appointment. They (it is a team of a dr, occupational therapist and physiotherapist) were very empathetic with Monica and gave her a series of injections to make it easier and less painful for us to both transfer and clean her. They also had some useful suggestions for us as caregivers regarding how to use the muscle relaxants and how to transfer her.After only a few days, we are noticing some beneficial effects. They also made it clear that we could come back for a further injection if necessary.
On Wednesday, Daniel's daughter, Mollie, joined Daniel (she had been with her mother in Alaska for the summer). Daniel and Mollie arrived home that night just as we were putting Monica to bed. The smile on Monica's face when she saw Mollie is something that I will remember for a long time.
Mollie has brought a different dynamic and energy level to the house. Monica is clearly enjoying watching Mollie and interacting with her. Mollie is very gentle with Monica and wants to help with everything. So, Grandma's daily spa team now has a 5 year old helping with her bath and the shampooing of her hair (not to mention operating the bath lift).
I am becoming more and more aware that I will soon need to make alternate arrangements to help me with Monica 's care. Jesse has to go to Inuvik for a month starting August 26th, Daniel needs to take Mollie back to Boise for kindergarten and Marley will be starting classes again on August 26th. At this point, the Homecare Service is going to provide help in the mornings and evenings with dressing and sponge-baths etc. Marley and I will probably give Monica a full bath in the evenings every other day. I haven't yet made a final decision but I think that I will hire someone else to help me with Monica for a part of each day (So that I can shop, exercise, pop in to the office etc.)
Wednesday, August 7, 2013
Wednesday, August 7, 2013
(posted by Greg)
Daniel has been home for two weeks now and Jesse for about 10 days. Monica and I are both enjoying having all 3 kids around home. I particularly appreciate the extra help with transferring Monica etc and with 4 of us at home we are able to each have some private time ( in my case I am working a bit). I think at some level the kids are each enjoying being at home with each other too (It has been a while since they all lived under one roof.). Overall, the interaction between all of us is very natural. Monica can't verbalize the thought but I am convinced that she is appreciating this time together. If there is a good side to Monica's situation, it is the opportunity that we each have to "show" Monica how much she is loved and appreciated. I think that we will all have good memories of this time together with Monica.
With the extra hands and the equipment which we now have in place, we are able to provide good care for Monica. So far we are able to do this without outside help. The Homecare service is monitoring our situation. Our contact visits each week and is helping us to plan for what the future will bring (in terms of care requirements). There is a palliative care doctor associated with Homecare. We have not yet met her but through the Homecare Nurse, she has now prescribed steroids for Monica. The steroids (which Monica was also given at the time of the original diagnosis and following the operation) reduce the inflammation caused by the tumour. Although the effects may be short terms, the steroids have the effect of "brightening" Monica and one of the side effects is a better appetite. So, Monica has been more verbal in the last few days (we all really like this) and has been eating well.
Monica continues to periodically surprise us with a good belly laugh at something funny or a timely comment.
Throughout ,one of the side effects of Monica's tumour has been that she has not been as emotional as you might otherwise expect. This has probably been beneficial as it has allowed Monica to remain calm. Today we got a bit of an emotional surprise however. The Homecare contact had been discussing some palliative issues with us and as a result we were discussing options for help for me when the kids cannot be here any longer (in about 3 weeks). Monica started crying but couldn't really express her thoughts to us. Her reaction caught us by surprise and within minutes we all had a good cry together.
Daniel has been home for two weeks now and Jesse for about 10 days. Monica and I are both enjoying having all 3 kids around home. I particularly appreciate the extra help with transferring Monica etc and with 4 of us at home we are able to each have some private time ( in my case I am working a bit). I think at some level the kids are each enjoying being at home with each other too (It has been a while since they all lived under one roof.). Overall, the interaction between all of us is very natural. Monica can't verbalize the thought but I am convinced that she is appreciating this time together. If there is a good side to Monica's situation, it is the opportunity that we each have to "show" Monica how much she is loved and appreciated. I think that we will all have good memories of this time together with Monica.
With the extra hands and the equipment which we now have in place, we are able to provide good care for Monica. So far we are able to do this without outside help. The Homecare service is monitoring our situation. Our contact visits each week and is helping us to plan for what the future will bring (in terms of care requirements). There is a palliative care doctor associated with Homecare. We have not yet met her but through the Homecare Nurse, she has now prescribed steroids for Monica. The steroids (which Monica was also given at the time of the original diagnosis and following the operation) reduce the inflammation caused by the tumour. Although the effects may be short terms, the steroids have the effect of "brightening" Monica and one of the side effects is a better appetite. So, Monica has been more verbal in the last few days (we all really like this) and has been eating well.
Monica continues to periodically surprise us with a good belly laugh at something funny or a timely comment.
Throughout ,one of the side effects of Monica's tumour has been that she has not been as emotional as you might otherwise expect. This has probably been beneficial as it has allowed Monica to remain calm. Today we got a bit of an emotional surprise however. The Homecare contact had been discussing some palliative issues with us and as a result we were discussing options for help for me when the kids cannot be here any longer (in about 3 weeks). Monica started crying but couldn't really express her thoughts to us. Her reaction caught us by surprise and within minutes we all had a good cry together.
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