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Don't know where to start

Started by jaindough

06 May 2014, 10:31 PM

Hello,

I found this board through internet searches for how to care for someone who wishes to die at home. My mother is currently hospitalized, suffering with brain cancer and her physicians have given us a timeline of less than three months. They have stopped chemo as it is not benefitting her anymore and she has refused radiation therapy. My mother has told me repeatedly that she wants to die at home and I want to do my best to make that possible.

Her mobility is greatly reduced. She needs helps to get from her hospital bed to the commode right next to her bed. Though right handed, she has lost the ability to use her right hand. She still eats quite well and is determined to feed herself. She has difficulty with this, but can manage to get through a whole meal on her own.

Unfortunately, all other members of my family are deceased and so I am the only one left to look after her care. I currently live far away from her (7 hr drive). She is being sent from the hospital where she was receiving treatment to the hospital in our small, distant hometown. I don't know what her healthcare team there will say but I know my mother wants to be sent home to live her final days.

I don't know where to begin. How do I facilitate this? Just the logistics of it all feel overwhelming. Do I rent hospital equipment? The only full bathroom we have at the house is on the second floor. Will she be confined to the second floor? Should I just say 'forget it' and make arrangements for her to hve her final days at the palliative care home in our town?

If any of you have any advice, I would be very appreciative.

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Reply by KathCull_admin

07 May 2014, 12:38 AM

Hello Jaindough,

Welcome to our community. I am glad that your search brought you here. This must be such a difficult time for both you and your mother with so many decisions and questions.

I know the members of our community will want to welcome and support you as well as share their experiences. Two of our members, Caringgf on Not sure what to do - boyfriend's mother terminal, and Xenia on how to deal with an ongoing illness and drs. telling you husband has 6 month to live are supporting family at home now.

You might want to check out the thread What does hospice and palliative care mean to you? for more information on what people are saying about palliative care.

The Virtual Hospice has information on many of the resources across the country and we would be happy to let you know about them. What area of the country do you live in?

Perhaps most importantly - how are you doing? Do you have family and friends who are able to support you?

Katherine

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Reply by Xenia

07 May 2014, 1:08 AM

Dear Jaindough:

Welcome to the community. I share your dileman about having a loved one die at home.

My husband has chosen to die at home as he has lung cancer and congestive heart failure and many other problems.

We had to speak to the doctor and a team from the Health Care system in B.C. I do not know where you live, however, this would be a good place to start as there are so many questions you need answers for and the health care providers in your city where your mother lives can offer you this help. Is there a social worker at the hospital? This is a good place to check and get help.

Have you arranged with your mothers doctor to have a DNR (do not resusitate) if she chooses this. Your family doctor will sign this and it is posted on the refrigerator so any ambulance personnel or home care aides can see it and be advised of her wishes.

We do not have to rent a bed for someone who is palliative or terminal. The health care system provides this for us, however, when my husband came out of the hospital on short notice and no help from the system we took it on ourselves to purchase a hospital style bed from Sleep country. Once the family physician became involved and we fit the criteria we were offered services from the system.

I was made aware of a special mattress for his bed, air filled bubbles called a RoHo bed so that he would not get bed sores. Should he become incontenet all the supplies will be provided. You need to check with the Red Cross and see if there are items you can rent - cost free for 6 months. They provide walkers, wheel chairs and one important item is the bed help. It is put on the side of the bed to help the patient to get out of bed. It has a bar that slips under the mattress and an arm on the side of the bed to help one lift oneself and help to get out of bed.

Our community nurses visit us once a week or if John is not feeling too bad they will contact us by telephone and we discuss his care. We have respite care twice a week, one is 4 hours the other is 3 hours. Three times a week we have a care aide coming in for one hour to give him his shower. He can still walk there with help. They are excellent and I do believe he looks forward to seeing them as I cannot help him shower as I have problems with my legs as I have had knee replacment and do not trust myself to bathe him.

John still enjoys his meals, however, he is having trouble swallowing and eating wears him out. I have started using the Hand Held wand to chop up the meat as he finds this hard to swallow and does not want food that is put in the blender. He gets out of breath when he eats and needs all the help he can get.

John is on morphine but hates to take it as he sleeps alot so I let him decide when he needs extra when he has breakthrough pain, meaning he has a long lasting morphone twice a day and if he gets more pain during that 8 hours he can have more morphine.

We are fortunate that we are able to have our family help us. Two of our daughters live in Vancouver, son lives there too, another daughter lives close by in our town and she visits often. They were very active in helping us with setting up our home for John's palliative care. We took glass doors off the shower, removed doors to the bathroom in our bedroom so he can be close to the toilet, we have removed all extras like coffee tables, etc. He uses a walker and we have a transporter (wheelchair) that is small and this is used for transporting him to and from the shower bathroom.

I know it can be overwhelming when you are faced with looking after someone at home and I too was in the dilema you are in at the beginning. I went to the professionals on Canadian Virtual hospice and got a lot of help. I was told to speak to the Hospice Nurse in our town and she gave me a lot of support.

I hope I have not overwhelmed you with this information, however, I feel that sharing helps me as well. It is dinner time here in B.C. and I have to get John settled in so will sign off for now and will be in touch asap.

Take care and do keep in touch with all of us who are or have been through the overwhelming time you are now going through.

Xenia

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Reply by jaindough

07 May 2014, 1:11 PM

Hello and thank you for your responses. Although none of us are in the most wonderful situations right now, it is very comforting to hear from people who are going through or have gone through the same types of situations as I am currently.

I am 34 years old and have recently given birth to my first child, a little boy who is now 11 weeks old. This beautiful time in our lives has been saddened, however, by my mom's illness. At a time when I would love to have my mother share in the joys of this new little wonder, I have instead been battling with stress and the guilt of not being able to be more supportive for her and her needs at this time. I live in Ontario, and mom is in Quebec (north western).

My father died of cancer when I was 26 (it had spread throughout his body very quickly as it was not caught early) and he passed away in hospital in our small, north-western quebec hometown. My step father died when I was 29 and he was placed in the palliative care home that we have in our hometown. He had pancreatic cancer that eventually spread to his lungs. The quality of care and the quality of the time spent in those final days were vastly different from the experience we had with my dad in hospital. I thought it was a wonderful environment to live ones last days.

My only sibling died three summers ago in a workplace accident, and so I am basically on my own in trying to sort all of this out. My husband is my rock and is always supportive of everything I have gone through and is my confidant. I am a rather private person, but my husband hears everything that churns through my head and heart and it is so very good to have that kind of support in my life. I have extended family several hours away from our hometown, but I know that they are not able to support me in any practical way when it comes to mom.

I do not have great confidence in the healthcare provided in our hometown (given my past experience). Mom had to be sent to Montreal just to receive appropriate chemo for her brain cancer; the care in my hometown is rather limited. Xenia, it sounds like the care where you are is phenomenal. I know that we do not have that level of quality care in our town. It is a huge ordeal to try to find someone to pay to come in for at home care.

I did not sleep much at all last night, trying to figure out how I am going to make this work. I know mom is really intent on being home, but she has very unrealistic perceptions of her own physical ability. I think the best thing for us, given the lack of external support and the fact that I have a not even three month old to look after would be to bring mom home for a short stay, say a week or so, and then have her moved to a palliative care home where they can better provide for her and there is less potential for falls or mistakes.

My mother will be discharged from Montreal soon (not sure when). I will call the palliative care home today and see exacly how they operate. I am pretty sure when it was my stepdad's time, he had to have directives written up by his doctor in order to get him in at the palliative care home. Spaces are very limited.

This is where I am at today. I will be sure to update you as things progress.

jd

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Reply by Xenia

07 May 2014, 3:16 PM

Dear Jaindough:

How nice to hear from you and congratulations on the birth of your son. With all you have had to bear in your life I am sure he brings happiness, wonder and love to both you and your husband.

I am sorry to hear that your father passed when you were so young and now with your mother in pallative sickness you have a lot on your plate. I have been married for 58 years and am 78 years of age, husband is 85 so we have lived a long time together and the expected loss of him just as the loss of your beloved mother can be very overwhelming.

We used to live 8 hours from our children then moved closer and then a decsion was made (by the children who encouraged us to look at our lives) that we should move closer to Vancouver away from the Valley where we moved to when we decided to give up living in the Cariboo...which is far north in B.C. I did not drive and still don;t so we had to move closer to hospitals, then when we choose Chilliwack, B.C. we found that John had many problems and the pollution there only caused it to worsen. So, we moved again with the help of the children letting us know they were there to help but couldn;t be on the road 1 hour to get to our new home in Chilliwack so we moved and it was the best thing possible for us. We live in a Condo, never lived in an apartment in mylife but this is good.

I am glad you have such good support from your husband. All this helps during this time and comforts you that you are not alone even though your sibling has passed.

Does your mother have a church affliation? If so there may be a Priest, Pastor or social worker who may be able to help you in your seeking for the place to have your mother looked after in her home or perhaps refer you to good care in a palliative care facility. Does she have any family in her town?

Your worry about where mother will spend her time is what I went through with my husband. My daughter suggested we put the bed in the living room if need be and a commode could be brought in from the bathroom. You would have to check this out and see what arrangements can be made with the health care providers and see what is available to your mother. Perhaps, it may be best if she is placed in a Palliative care facility some time later if there is no one to look after her.

We do have good palliative care, however, like all provinces with the seniors aging and illness prevelant getting care is hard. Like I stated my husband was discharged on short notice and we had to take his care into our own hands and thankfully our family doctor took over and within two weeks we had palliative care as it costs less to have him at home rather than in an acute care bed as there are few palliative care homes and Hospice care was not in the picture at this time.

I would suggest you speak to all the Health providers in Montreal before she is discharged and then with the health providers in her home town. Speaking of not sleeping, I sat at the computer at 3:00 a.m this morning as I could not sleep and read a lot of the messages on the Discussion forums as well as the professional help.

I turn here as nights are long and my mind keeps running so I have to take a break and say enough and look after myself.

I shall be in touch again. Take care of yourself and make time for yourself and your beautiful baby boy. Hugs to you both.

Xenia

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Reply by marstin

07 May 2014, 4:27 PM

Hi jaindough,

You have come to a great place to share your load. This community is incredibly supportive and kind.

I have read and reread your posting and can see how difficult of a predicament you are in. I think we all want to follow the wishes of our loved ones but sometimes it can be so overwhelming. My partner Len passed away at home which was his wish but the caregiving was something that consumed us 24 hours a day. Although I have never regretted it, it was a very difficult thing to do. We did have nurses come in to help with the care and as Xenia said, all equipment was supplied free of charge. I also had my Mom go into hospital the day after Len passed away and we were told that they couldn't do much to help her and put her in what they called 'comfort care'. In her more lucid moments she kept saying that she wanted to go home. This was a difficult time. My other family members discussed the possiblilty of doing this but having just gone through it, I knew that I just couldn't do it again. I had looked after my Mom for years on a daily basis before this but I was so exhausted from looking after Len that I knew that I couldn't take that on and that the rest of the family had no idea how much of a commitment that caregiving needs. I didn't fight them on it but also didn't try to push it forward. I also didn't think her frail body would be able to handle the move. Ultimately, she stayed in the hospital and we were able to get her into a wheelchair and outside to enjoy the sunshine and fresh air just a few days before she passed away. She was well cared for by the nurses and we were able to spend quality time with her without the stress of caregiving.

You have been through so much and now when this should be the happiest time in your life with the birth of a new baby boy, you have to make these difficult decisions. There are no right answers to your question. A newborn demands so much time and so does the caregiving for someone with terminal illness. You also have to have some time for yourself as your body readjusts to all of the hormonal things that happen after giving birth. The bathroom issue might in time not be a problem because there is the chance that your Mom will become bedridden and will not have the mobility to get to the bathroom. If you had space on the main floor for a bed for her and a commode so that she didn't have to climb the stairs to get to the bathroom, it might be workable. I think it all comes down to whether you think you have the energy to take this all on. Maybe moving her into palliative care and bringing her home on day passes would give you a better idea of whether you could handle it full time. As much as we want to follow the wishes of our loved ones, sometimes it's just not possible. At least if you were to try it this way you would have more insight into whether this will work for you.

Hugs,
Tracie

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Reply by jaindough

08 May 2014, 9:48 PM

Hi Xenia,

It sounds like you had many wonderful years with your spouse and I hope that those memories of all your happy days together carry you through your hardest times.

Last night I couldn't stop thinking about the good times with mom, and also dwelling on the stupid petty arguments we had had in the past. It feels so pointless now, thinking about how much energy we may have wasted on our spats as mom and I didn't always see eye to eye. I see now that her character is rooted in a great deal of insecurity and she is so frail and vulnerable now. That shy, insecure person is completely exposed and it breaks my heart that I didn't see it earlier.

You and your husband did the right thing moving closer to your children. One of our arguments was that mom refused to leave our hometown to come any closer to me and my husband, especially after we lost so many loved ones. I told her many times that if anything were to happen, I would be in a very difficult place to help her at all.

Our nearest family is four hours away and they have their own health concerns so I know that their support is from a distance and is not the 'roll-up-your-sleeves' kind of support that I need right now. I am quite sure that I am on my own (with my husband of course). I contacted the palliative care home in our town yesterday and got a little more information as to their process. I know I do not have the physical or emotional endurance to help mom die at home. That was a hard decision to make (and one I am still turning over in my mind) but I think it will allow us to better spend our final days together as mother and daughter.

Tracie, I read your reply and I cannot imagine all that you have been through as well. I can't fathom having to face another great strain of a very sick loved one so soon after losing your husband. I think you made very sound choices in the face of such a difficult situation.

I think your idea about day passes out of palliative care are probably the best thing for us. I did ask the palliative care home and they said it was possible to have mom come home for a few days before being sent to the palliative care home. That sounds like the best option.

My mom has just been sent back to our hometown today. Nobody from her care team let me know ahead of time. I am now scrambling to get mine, my husband's, the baby's and the dog's stuff packed. i am going to leave early tomorrow morning (if husband's work allows for it.) I talked to mom and she was very tired but sounded content. I feel terrible that we couldn't give her a heads up about having to leave. It's very stressful for her because she needs to be reminded several times for her to feel at ease and comfortable with events that are going to happen.

That's the news for now.

jd

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Reply by KathCull_admin

08 May 2014, 11:45 PM

Memories are such a mixed bag aren’t they? Those that are tinged with regret nag at us for attention and try to take away from those loving, warm ones you were had last night.

The way you speak of your mother makes me think, that although not every memory is a good one (like most of us I would think) – you have a strong relationship. It sounds as though you are ready to move heaven and earth to make sure she gets the care and support she needs. What a huge gift to her. I hope you can take comfort in that.

Take care JD and I will be thinking of you as you get ready to go and are on the road.

Katherine

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Reply by Xenia

09 May 2014, 12:40 AM

Dear Jaindough:

I just read your message and pray that you take care when you begin your drive to your mother. You are tired and have to do the packing and brining baby with you you will need to pace yourself.

Ask for help immediately when you get to your destination. It is most unkind that no one contacted you when they released your mother to her home. I do hope you can have her in palliative care during the time you make arrangements for her continuing care.

Thank you for the kind words, I was going to sit down and write about how I was close to tears just before I read your message. John is feeling poorly and I could tell this all day but he just says nothing then said I will need a pill before dinner. If he complained I think I could take it but he just looks tired and weary. I notice he rubs his hands down his knees and I know this is self soothing when the pain begins and he also told me he just doesn;t want much to eat so I keep the goodies he likes just in case. Palliatve care he can have want he wants, he loves chocolate even though he is a diabetic. So he can have his chocolate and goodies he loves like Maple Walnut icecream.

Regrets, yes, we do have them, memories seem to obliterate the regrets. My one regret is that John is not a talker but I know he appreciates all that is being done for him. The other day he told me he felt sorry for me, I had a huge back ache and my siatica was killing me,...even though I am going for treatment. That made me sad that he was telling me he felt sorry for me. Oh well, the kids tell me, mom dad just has to look at you and you know what he wants. Then they laughed about me telling the doctor that John doesn;t talk much, doctor replied why does he have to , you do it for him. Another memory pasted in my memories.

Tracie has been a great support to myself and I am sure many others on this message board feel the same. We all share and learn from each other, the sad, the good and the laughs we have dealing with our loved ones.

Please, Jaindough, take the trip to your mother's place slow and easy. Rushing and tiring yourself is not going to help. You need to take care of yourself before you can take care of mother, baby and husband. You need to take care of No. 1 first.

Hugs to you .

Xenia

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Reply by JennJilks

11 May 2014, 11:42 AM

Jaindoe, sounds like you have quite a load to carry, especially with a young one.

I am a hospice volunteer, although I began my journey caring for my mother a

nd father. Mom was determined to die at home. She simply faded away, eating less and less. Maybe a tablespoon of food 3 or 4 times a day. She would sleep, wake, go back to sleep. She was able to go to the bathroom, although at the end used a brief as she couldn't control her bowels. She died on Mother's Day weekend 2006. I was away giving workshops to women on curriculum and technology. I had no idea she was that close to death. Here are some supports I've gathered from conferences, in terms of indicators of palliative symptoms. They will help you understand the progression in terms of expectations.

My late father had a brain tumour. He was immobile, unable to make it to the bathroom, weaing briefs, which he attempted to remove. He went from using a walker to a wheelchair. I was working full-time and we placed him in long-term care. My dear husband attempted to get him from his wheelchair to bed, and put out his back. He had 2 years of physiotherapy, and it still haunts him if he moves wrongly.

You need to know about the disease trajectory for your mother. (Again, I went to a seminar on this, and wrote a post.) With a brain tumour, headaches are common. Dad had terrible pain, which we found difficult to monitor, since the tumour caused him to have dementia symptoms. He could not process nor articulate his needs.

Personally, I would keep your mother in hospital until it is time for a hospice, if you have one nearby. One of my most recent clients just passed over with a brain tumour. Her daughter was there, changing her briefs, washing the fecal matter off of her, feeding her, monitoring her medications, supervising the support workers who would come in (twice a day). She was amazing. She lived with her parents while her father went to work 5 days a week. Her teen aged daughters were not coping well, when she went back to be with them on the weekends.

I don't want to scare you, but you should know what you are facing.
I left my adult children to move 400km to look after my parents. You have a young child who needs you, if I read you rightly.
This romantic myth of a lovely, peaceful death at home is one that must be balanced with YOUR health. Many caregivers suffer ill-health as they try to manage.

I firmly believe that our healthcare system is capable of managing to give people a good death. I have written a blog post about this, as I have strong beliefs! I didn't know what I was getting into, quitting my job, moving, leaving my support system behind.
All the best. You are not alone, but you do have to do this by yourself. No one can make these decisions for you. Including your mother. You have to do what is best for your extended family.
Jennifer

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