Discussion Forums

Reply by Xenia

01 Sep 2014, 3:38 PM

Good Morning Blackcat and J:

I just logged in and read your messages and would like to send my wishes that by logging into Virtual Hospice you will find much support, understanding and no judment for your feelings.

I have struggled with many various things in my life, however, not the many struggles you have gone through and are going through. I understand your dilema about being called various names since you went to the clinic for your mental health. Good on you, you admitted you needed help and went ahead and found a solution or help for your illness. So many of us are afraid to admit we have these problems and as a mother of a son who has bi polar problems I went through many of the problems you are going through.

He celebrated his 5 years of soberity as with many persons with bi polar, and other mental illness he tried to medicate him self with liquour and some drugs. We went though terrible times and then he admitted he needed help and since attending a program far from home he sobered up, got proper medication and now is and was a functioning person with bi polar problems. He always worked but had his highs and lows.

I am dealing with ahusband who was given 6 months to live almost a year ago so have had many ups and downs. The drs. and nurses tell me that his type of illness can go on for a long time and is very distressing to the caregiver so I turn to this message board for support. Hospice does not deal with this type of illness and so I have the community nurses and palliative care in the home. Also get 4 hours each week for respite and I do have a very supportive family. To-day son and daughter are coming over from Vancouver to our home in the Valley. They are bringing their Napoleon Minchkin cat for John to have some time with. An adorble cat and he gets some pleasure in holding the kitten and gets a visit with son and daughter.

Yester day we went to our grandson's new home and he looked forward to it for so long but it wore him out. 45 minutes from our home to Burnaby and when he came home and during the visit he couldn;t breath properly, we do carry oxygen and his meds so he can have time out. HOme, he went to bed and slept the rest of the day and to-day he is still having to sleep to recuperate.

Here I am writing a story, however, you can see that this message board lets us pour out our feelings, no matter how strange or hurting) without judement and know that we will be understood.

I go through periods where I want John to pass as he is so ill, then I yell at myself for being such a creature, then want him to live forever so mixed feelings are part of this journey but it is also a learning journey.

Better sign off as I have to contact the oxygen delivery people and get on with my chores for the day. Take care and keep in touch.

Hugs to all on this message board.

Xenia

Report this post

Reply by NatR

01 Sep 2014, 3:52 PM

Hello Xenia,

i wanted to to wish you a good afternoon. I read your notes and I am in awe of your ability to cope with so much and for so long.

no one would blame you for thinking out loud, wondering how long you have to caregive, wondering how long your husband has to suffer.

its wonderful that you have family to lean on - and your kind words about the forum group means a lot:)

i am wondering why you only get 2 hrs a week for yourself!
honestly you need a night away once in awhile and you should ask your children if they can give you a break - at least once every two weeks or so.

two hours is hardly enough
dont feel guilty about taking more time for you
personally I know how much good it does just to have a good sleep without listening for your caree to need you / just to relax and not have to get up til you are ready -

i admire your strength and commitment - but as more time goes on, much longer than first predicted - you must take care of you the caregiver!

sending you best wishes :)
sincerely,
natR xx

Report this post

Reply by jorola

02 Sep 2014, 12:24 AM

Xenia is my girl. Strongest woman i know

Report this post

Reply by NatR

02 Sep 2014, 1:49 AM

You are right Jorola
Xenia is one of a kind:)
wishing you both and all readers a good evening :)
natR

Report this post

Reply by Xenia

03 Sep 2014, 4:53 PM

Good Morning All:

Another day and all is going well. Another lonely evening with John going to bed right after dinner. Read a bit and watch the box, not much else. Beginning to feel like a shut in some days.

To-day is my 4 hour respite, daughter just called and we will do some shopping, have lunch and head home. Don;t need much in the grocery line as meals are getting harder to prepare as John doesn;t know what he wants so I have to make some last minute changes.

The roofers are here and I am glad I am out. Bang and bang all morning. Be glad when they finish. Actually, they better finish soon as the rains are coming.

I have been writing some letters to the newspapers hoping they will print them but I guess palliative care is not their forte. We are so short of palliative care and now the Canadian Medical Assocition is asking the federal government to put more funds into this. Also all the premiers of the provinces and the 3 territores have decided to get together to ask for this funding now that they realize more seniors are needing this care.

I for one do not know what I would do without the nurses coming weekly and the aides coming 3 times a week to bathe John as I simply do not trust myself to bathe him. I had a knee replacement and just couldn;t hold him if he should fall in the shower. Thank goodness for these smallmercies. Now to ask for an overnighter as you suggest Nat.

Not much else to write this morning as I am getting ready to go out. Take care all.

Xenia

Report this post

Reply by NatR

03 Sep 2014, 5:20 PM

Hello Xenia,

i hope you have a good day out of the house today. It's nice your daughter will spend some time with you, it's very supportive to have that connection and communication

I admire your devotion to your husband - and it's good to know you have enough help for bathing and personal care. As you said it becomes nerve wracking when you know you don't have the energy/ strength to keep him from falling.

i am interested to hear that you are writing about your caregiving experiences - it's a shame the papers won't publish them - there are plenty of people who need to know there are other caregivers out there - it helps to share the experience and give/receive support and understanding.

yes I have been following the news about the need for more help for families at home - more compassion, more understanding.

xenia save your letters and writings - they may come in handy in the future - another opportunity may present itself to share your thoughts

best wishes,
hugs
NatR

Report this post

Reply by KathCull_admin

11 Sep 2014, 3:55 PM

Hi everyone,
Xenia and Oldbat I, like NatR, am glad to hear you are able to put pen to paper (or finger to keyboard) to write to those who are able to listen to your concerns. From what others have told me, writing those letters is not easy – it takes time and effort when people are already busy and tired. Your experience Oldbat in But who advocates for me? shows that people do listen and act.

Blackcat was the doctor able to give you some helpful advice for your mother? Did you find a caregiver support group? This link, Programs and Services may help.

Jorola, how are things for you and Mick this week? You have been married almost 2 months now!

Katherine

Report this post

Reply by KathCull_admin

02 Oct 2014, 4:31 PM

Hello
Blackcat I just saw your post regarding your mother's passing my mother passed My sincere sympathy to you. I am glad your mother passed quietly and peacefully and that you were able to be with her.

I know that others on this thread will want to offer you their support as well.

Take care
Katherine

Report this post

Reply by Xenia

02 Oct 2014, 6:23 PM

Hi to All:

For those who are not aware, I did have my lettr to the local paper printed then the main one in Vancouver. I am printing it for your read.

The heading was under: Health Care

Support better home care:

Dear Editor:

With the Canadian Medical Assocation and premiers from 10 provinces and three territores asking the federal government for morefunding for plliative care for the ever increasing number of seniors,we need to ask ourselves wo will care for us when we reach the point in our lives where we need palliative care.

As the wife/caregiver of my husband who is receiving palliative care in our home, I would like to thank the palliative home care nurses for the help in caring for my spouse.

These are the nures who are on the front lines dealing with patients in their homes at their most vulnerable time in their lives living with pain, uncertainty, and fear.

They provide the stability to thepatient and caregiver who look to them for guidance dealing with many challenges of nursing a loved one in the home as well as helping to allay their fears.

We were fortunate in receiving this care and are concerned as many patients discharged from hospital have to wait for pailliative care. There is shortage of palliative home care nurses and the aging poplation need answers to "who will care for me" when I need care?

We need to convey to our government, all health care providers, hospitals, doctors and the community just how much the elderly depend on these nurses and their visits and/or telephone calls. They bring an understanding of care that is different from being in the hospital. Visiting the patient in home they provide medical care, support, information and overall compassion, not only to the patient but to the home care giver.

Fraser Health's moto (this is in B.C.) "Home is Best" and we agree, however, there should be more assistance to patients and their families by having more home care nurses in the health care system. Providing the support of palliative care nurses to patients in the home will benefit not only the patient but the hospital and medical care system as well.

From data of Interior Health and the BCNU and others in the report "Caring for BCs Aging Population:(2012) the cost of treating a senior in an acute care bed ranges from $826 to $1,968 per day for residential care, where the cost is approximatley $200 per day for home care.

This data alone shows the "Home is Best" and without home care nurses and care aides patients are cared for by a family member under stress.

At this time all citizens should support the Canadain Medical Assocation and premiers by contacting their MLA and MPs, politicians, and bring their voice to the need for the federal government to provide more funding for palliative care and home care nurses.

Yours truly....my name

Trust this is not too long but we all need to get more proactive and get a campaign going to get more home care, etc. I researched the cost and after I wrote this letter I found new info from our government that the cost actually is more for acute care beds.

I am quite proactive and when John was kicked out of the hospital acute care bed under the advise of an OT I got in touch with the BC government Patient Quality care, the TV and the Head of Fraser Health. It worked we recived palliative care but what a fight. Had good doctors on my side as once the hospital here read my letter they told our dr I was a disruptive person. Dr. was so angry as was Johns other dr, saying I was one of there best caregivers and they disputed this. Also got letters, etc. No apolgy just saying they would pay more attention and communicate more with caregivers, etc.

Enough of my soap box, but I thought you might be interested in this letter.

Take care.

Xenia

Report this post

Reply by NatR

02 Oct 2014, 6:43 PM

Xenia
congratulations - a beautiful letter - that's awesome!
natR

Report this post

Enter your email address (the one you used when you joined Canadian Virtual Hospice). We will email you a new password right away.

Email Address:

Become a Member

As a member of the Canadian Virtual Hospice, you can ask a question confidentially on Ask a Professional and contribute to the Discussion Forums. Join for free now to connect and share with others.

Discussion Forum members receive a monthly newsletter. You also have the option to sign up for the Canadian Virtual Hospice monthly newsletter.

Please fill in the information below.

Nickname:*

You will be known to other users only by your nickname. You do not need to reveal your identity by using your full name, real name or email address. Choose a nickname that is easy for you to remember.

Email Address:*

Your email will not be visible on the Virtual Hospice website. We will NOT sell, distribute or misuse your email address.

Password:*

Confirm Password:*

Country: