Start of a difficult road.
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Hi Frances,
Like you, I was the sole carer for both my mum and my dad and yes this is tough and especially more so when you have no one else to bounce things off, such as brothers and sisters etc. But please know that we are here for you and we know what you are going through. There is a wealth of knowledge and experience here so please feel free to come here and ask any questions that you have. None of us are doctors, but we know what you are going through and how you feel.
I am glad to hear you say that your mums pain is being controlled righjt now with her morphine patches. There are a lot of things that can be done to control pain and in my dads case, his hospice team did an outstanding job in controlling and monitoring his pain throughout.
Taking things one day at a time is a good idea in my opinion and this is what I did also with my dad.
My best to you and your mum,
Gavin
Hello Lainy,
Thank you so much for taking the time to send your most welcome message. So sorry to hear that Teddy is also having a tough time. To watch a loved one suffer is so hard but I am sure that for them to know that they are loved in such a time must be a help. I completely understand what you say when you say your bottom line is to keep him comfortable I’m sure we can all fit in that basket. My Mother is not in any pain and is only on a morphine patch which is changed once per week. I am sure worse is to come, but we all take it one day at a time (how many times have you said that to yourself) Yes the tiredness is a big part of the whole process isn’t it. Guess we have to think that with sleep comes peace, that is what I try to think anyway. Happy Birthday Teddy for yesterday wish it could have been better for you. So nice to think he still thinks of you as his bride at such a difficult time, bless him. Stay in touch please and let me know how things go for you. Will think of you every day.
Warm regards
FrancesLainy wrote:Hello Frances! We are so sorry to hear about your Mother and it sounds like she is about where my Husband, Teddy is with Hospice. They come in twice a week and take his vitals and order anything we need. He is on 75mg of Morphine twice a day and can take break through Morphine when needed in 10 – 15 mg doses. The bottom line to me is to keep him comfortable. I plan on keeping him home to the end unless I cannot handle it. We shall see when the time comes. At first Hospice thought he had until the first week in October and he is here and ready to celebrate his 78th Birthday Wednesday. His only symptom beside the pain is the tiredness. He sleeps a lot. I notice now his speech is not so good and some times its hard to understand him. He gets confused a little now but guess I would if I was on Morphine. Its quite a journey and your Mother is very lucky to have you by her side. I hope you can make many endearing new memories with her, that is the road we have taken. Teddy tells everyone we are on our honeymoon! Please keep us posted on how Mother is doing.Hello Kimmie,
Thanks for your much welcomed message. Just a kind word from someone that really knows what you are going through somehow is such a comfort. Yes I am the only one to care for my Mother I have no siblings. Such a rollercoaster (as you know). The big thing that is helping me right now is that the pain is under control, even though watching her sleep for so long being so frail isn’t great, at least when she is asleep I know she isn’t feeling anything. Mom is 88 we all know that is a good age for anyone but it isn’t making it any easier, she has been a wonderful Mother and I am lucky to have had her for so long. There is a saying “If Mothers were flowers I would pick you”. If we could all say that the world would be a better place.
Again thanks Kimmie for your message I will stay in touch.
Warm regards
FrancesFrances – so many parallels between your experience and ours. My Mom had a CC recurrance in late June. Two rounds of chemo did nothing, so they stopped and we opted for quality over quantity. She also had nausea, reflux and back pain. From becoming so fatigued she had a fall at home, badly spraining her ankle. That’s when she moved in with my sister and was put on home hospice. Sounds similar to your Silver Chain – they came in once a week to check her vitals, update meds, etc. They were wonderful at providing medication for whatever she needed, especially pain and nausea. They set us up with a hospital bed (I called it the Transformer Bed because you could adjust it a million ways), bedside commode, oxygen, hospital table, everything we might need. Home hospice also sent out a home health aide two times a week to bathe Mom, wash and dry her hair, etc. This angel even painted Mom’s nails! We also got weekly visits from the chaplain and a social worker came a few times.
Are you the sole caregiver or do you have other family members to help you? My sister and I shared in Mom’s caregiving for the 6 weeks she was on hospice, and it was very draining, both physically and emotionally. HOWEVER, we wouldn’t change anything we did – if we had to do it over again we’d have her on home hospice and do everything we did. So many precious moments during that time, memories that I’ll always have. And, although it wasn’t her own house, she was at my sister’s surrounded by family and grandchildren. That was what she wanted.
This website is a wonderful resource – keep coming, reading and posting.
Lainy – Happy birthday to Teddy this week. Frances – Keep writing and communicating. It is a difficult process but there are many angels that help you get through just by listening and caring about your journey. My husband has good days and bad and as others have said, it is a roller coaster ride. We plan to keep my husband home until the end. We are not yet on hospice (due to a lack of insurance). My husband has had some chemo which did not give him adverse effects. He may pursue other treatment or continued chemo so we hav enot gotten on hospice yet. At some point, we will. My husband was also stage 4 and was told he had about 90 days. We are on the cusp of that now and he is holding his own. He sleeps a lot, has diminished appetite and started retaining water this week. We have managed the water retention naturally with elevating his legs, green tea, and lemon water. The doctor advised keeping an eye on his sodium intake. Our prayers are with you. Blessings, Susan
Hello Frances! We are so sorry to hear about your Mother and it sounds like she is about where my Husband, Teddy is with Hospice. They come in twice a week and take his vitals and order anything we need. He is on 75mg of Morphine twice a day and can take break through Morphine when needed in 10 – 15 mg doses. The bottom line to me is to keep him comfortable. I plan on keeping him home to the end unless I cannot handle it. We shall see when the time comes. At first Hospice thought he had until the first week in October and he is here and ready to celebrate his 78th Birthday Wednesday. His only symptom beside the pain is the tiredness. He sleeps a lot. I notice now his speech is not so good and some times its hard to understand him. He gets confused a little now but guess I would if I was on Morphine. Its quite a journey and your Mother is very lucky to have you by her side. I hope you can make many endearing new memories with her, that is the road we have taken. Teddy tells everyone we are on our honeymoon! Please keep us posted on how Mother is doing.
Gavin wrote:Hi Frances,Welcome to the site. I am sorry that you had to find us and I am sorry to hear about your mother. I can so relate to what you are going through right now as a year ago I was where you are now with my dad. He was diagnosed back in 2008 so I know the journey you have been on and what it involves. I am glad that you have joined us all here as you will get a load of support and help from us all.
My dad had a lot of the same symptoms and issues that your mum is experiencing right now, and he suffered a lot from fatigue and used to nap during the day a lot. He also had the reflux and nausea quite badly and tried a variety of types and amounts of medication for this, some with greater success than others. Does your mum take anything for her nausea, as there are quite a range of meds that can help with this. My dad also had pain in the same areas as your mother to varying degrees and he used to take Solpadols for this 4 times a day and that seemed to work for him. However his pain did increase a bit once he went into hospice, but again that was greatly controled with meds and pain shots when needed.
Marion makes an excellent point about caring and having a strong care team around you. Is it just you caring for your mother or do you have other help, and have you spoken with hospice yet? I know that in my case, it was just me that was caring for both my mum and my dad and it is tough. My dad wanted to stay home as long as he could but thought much about how that would affect my mum. But he was admitted to hospice for his nausea issues and once there, he said that he felt more comfortable and secure. I guess that it is down to each individual and their families as to what is best for them.
As to your question regarding whether or not you will be able to keep your mother at home to the end, I can not answer that as everyones experiences are different. And I agree with Marion’s point about keeping your options open and see how things progress. As to my dads care in hospice, I have nothing but good things to say about the care that he experienced there and nothing was too much trouble for the nurses and doctors.
I know that this is such a tough time, but please know that we are here for you so please come back as much as you want.
My best wishes to you and your mother,
Gavin
Hi Gavin,
Thank you for your helpful message.I am in Australia and we have what are called Siliver chain (bless them) they are paliative care and call around to the home at the moment once per week but of course this will change as circumstances change. I am an only child so apart from friends there is no one to “bounce” things off. Mom has the choice to go into into hospice at any time, but I know should would rather stay in her own home. Who knows maybe this will change as time goes on. This week so far seems to be a “sleep” week, so little energy. Pain hasn’t been a great problem the morphine patches are doing wonders as far as that is concerned.
I realise after receiving both yours and Marion’s messages, I do have to take things day by day and not look too much into tomorrow.
Thanks Gavin for all your help, I will stay in touch.
Regards Frances
marions wrote:Hello Frances and welcome to our site. I believe that people should leave their options open when caring for a loved one. Do you have hospice available to yo? I don’t belive that you should attempt to care for your Mom without a strong medical support team. In fact, someone used the phrase on this board: prepare for the worst and hope for the best.
I am hoping for others to chime in and help you out.
Best wishes,
MarionHello Marion,
Thanks for taking the time to post your message. I do have a paliative care team of nurses (I’m in Australia, we call them Silver chair) they are on 24 hour call for me if and when ever needed. At this stage they only call in to monitor Mom once per week. When necessary this will be changed. Mom’s biggest problem right now is fatigue so she sleeps a great deal of the time. Pain is under control with pain patches. I am taking it day by day right now, but will keep you up to date as to how I go.
Regards FrancesHi Frances,
Welcome to the site. I am sorry that you had to find us and I am sorry to hear about your mother. I can so relate to what you are going through right now as a year ago I was where you are now with my dad. He was diagnosed back in 2008 so I know the journey you have been on and what it involves. I am glad that you have joined us all here as you will get a load of support and help from us all.
My dad had a lot of the same symptoms and issues that your mum is experiencing right now, and he suffered a lot from fatigue and used to nap during the day a lot. He also had the reflux and nausea quite badly and tried a variety of types and amounts of medication for this, some with greater success than others. Does your mum take anything for her nausea, as there are quite a range of meds that can help with this. My dad also had pain in the same areas as your mother to varying degrees and he used to take Solpadols for this 4 times a day and that seemed to work for him. However his pain did increase a bit once he went into hospice, but again that was greatly controled with meds and pain shots when needed.
Marion makes an excellent point about caring and having a strong care team around you. Is it just you caring for your mother or do you have other help, and have you spoken with hospice yet? I know that in my case, it was just me that was caring for both my mum and my dad and it is tough. My dad wanted to stay home as long as he could but thought much about how that would affect my mum. But he was admitted to hospice for his nausea issues and once there, he said that he felt more comfortable and secure. I guess that it is down to each individual and their families as to what is best for them.
As to your question regarding whether or not you will be able to keep your mother at home to the end, I can not answer that as everyones experiences are different. And I agree with Marion’s point about keeping your options open and see how things progress. As to my dads care in hospice, I have nothing but good things to say about the care that he experienced there and nothing was too much trouble for the nurses and doctors.
I know that this is such a tough time, but please know that we are here for you so please come back as much as you want.
My best wishes to you and your mother,
Gavin
Hello Frances and welcome to our site. I believe that people should leave their options open when caring for a loved one. Do you have hospice available to yo? I don’t belive that you should attempt to care for your Mom without a strong medical support team. In fact, someone used the phrase on this board: prepare for the worst and hope for the best.
I am hoping for others to chime in and help you out.
Best wishes,
MarionMy Mother was diagnosed 12 months ago. Specialist gave my Mother “months” We have been so lucky and have had the full 12 months. But since a recent fall it’s been down hill. My Mother wants to stay at home and this is my wish also. At the moment experiencing nausia, pain in back, reflux also pain in upper abdomen, also fatigue (big time). She is on morphine pain patches (given by the Silver chain nurses) these are 10 mg, changed weekly. That gives you an idea where we are up to. My question is if having gone through this yourself as a carer am I going to be able to keep Mom at home till the the end.
Thanks for anyone that has been or is going through this dreadful thing and takes the time to reply.
Thinking of you all.
Frances
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