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how to be patient and hopeful 
Started by Nouce
19 Jun 2014, 2:43 PM

My husband was diagnosed with neoplastic meningitis (T-cell invasion of the central nervous system) 18 months ago and we were told he had 3-6 months to live. However, he is still living, and has instead suffered a slow and debilitating decline. Now he can only walk a few steps, and is no longer able to make decisions (like about money), or even "what to wear to church." Yet he often gets impatient with me for hovering. I work full time and have had a lot of support from church and family. But I am getting worn out with the unknown, and with being unable to make any plans, even regarding traveling for more than a few days. Any wisdom on living in long-term limbo?
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Reply by KathCull_admin
19 Jun 2014, 6:26 PM

Hi Nouce, 
Welcome to our community - I am glad you found us. Here you will find others who can understand and support you.

Caregiving takes a toll on people – I can fully understand why you are ‘worn out’. Mary M. on the thread 
New Here  is also caring for her husband at home. 

You might find the article Caring for yourself  helpful. There are a couple of ‘Canadian specific’ pieces of information, but I think for the most part it could be of benefit no matter where you live.

Can you tell me a little more about yourself Nouce.  Do you have family close by?  Do you and you husband have the support of healthcare providers who come to your home?

Katherine

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Reply by Nouce
20 Jun 2014, 12:44 PM

Thanks for the article on caring for yourself. I find this a really struggle.

We have a very supportive church community, and our two daughters and their families also care a great deal, although they both live at a distance.

Right now we are enrolled in hospice, but because of the long nature of our journey with this disease, we are always at risk for being discharged (US Medicare pressure is to get people out of hospice). It will be much harder if we do not have the nurse and social worker to help us strategize.

My fear is that folks will tire of this story, since it is so long and slow, and they can't see the little steps of decline I see every day. I also wonder about my stamina to walk alongside if my husband's illness lasts for another year, or longer.

But I'm so glad to have found your site, glad you let US-ers read it, and it gives me a sense of not being along.

Nouce
 

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Reply by Brayden
20 Jun 2014, 9:09 PM

Dear Nouce,


Thanks for coming onto this site and being open about your difficult journey. I can only support the info in the posting Caring For Yourself. It is critical for you to find appropriate support resources for you to get the amount of respite that your body needs. Many cities have Paliative Care volunteers that come in on a regular basis to give you a break. Home care services may also be there for you. You may have this discussion with the Social Worker at your husbands hospital. Just do not feel guilty in persuing this aggressively. As you have sensed, you can burn out and end up not being there for your family. Please keep us updated as this community cares about you and wants to give you moral support. Blessings,


Brayden

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Reply by NatR
20 Jun 2014, 10:11 PM

Dear Nouce,

i am am sorry to read of the diagnoses for your husband and how difficult the caregiving role is as you stand beside him.

if I read right - you are in the USA - not sure what services might be available to you for respite care - for you as well as your husband.

 It feels like a very lonely thing - to any caregiver taking care of a loved one at home.  Don't despair - we surely can understand and will listen and support as we can

be aware that your gift of caregiving is Priceless - and keep posting when you need to vent.  Hoping it helps to know you are being heard.
sending my thoughts your way,
sincerely,
NatR 
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Reply by Mary M.
20 Jun 2014, 10:13 PM

Dear Nouce,

Welcome to this board. I, too, am caring for my husband. He has COPD and was given 3 months to live a year ago. I am now on unpaid leave of absence taking care of him. I mention this because I want you to know I understand on how many levels this effects us. Emotionally, physically and financially. I live in Canada now, but am originally from Texas. I thank God that I do live here. I don't have the added burden of worry that I might get "kicked out" of the hospice system. 


There are so many days that I just think that I cannot go on. I never expected this to last like it has. I am glad my husband is still with me, but I am exhausted. Each day I see more decline. There is very little left of the man I have known all our married life. This is so hard. The only thing harder is when he has a moment of clarity and he is acutely aware that he has changed so much.


I wish I had some words of wisdom about dealing with the fact that there is no way of knowing how long it will last or of not knowing how much harder it can get. No one knows. I am not dealing so well myself. I really hear you when you say how you see the decline that others cannot see. Remember, others are not living it like we are.


Last week I made doctor's appointments for myself with specialists that I am overdue seeing. I guess I kept thinking that I would wait. I realize from talking to the people here and reading the material that this is not the right thing to do. I have to do as much as I can for myself because I have to be able to care for my husband. I will not be able to do this if I am physically unable. I knew this already, but the people who have responded to my posts really helped drive it home.


So, while I cannot really give you any pearls of wisdom on dealing with not knowing when it will end, know that I am am here. I will listen if you need to vent. You are not alone. I care.

Mary             
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Reply by Nouce
22 Jun 2014, 1:16 PM

Thanks, Mary! I know others live this same journey. It's good to hear from you. I do wish the US system weren't so crazy and unhelpful. Our hospice just got taken over by a big system and they are cutting back on everything!

I have a very good therapist and massage therapist, but they aren't covered. So do everything you can to give yourself strength, and to feel loved/cared for. This is perhaps the hardest part of losing the presence of a partner who is no longer able to be a partner, but still needs you.

Nouce
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Reply by Xenia
22 Jun 2014, 10:43 PM

Dear Nounce:

Welcome to the message board.  I too have had and am often feelings of loss, impatients, worry, sadness and all that goes with having a husband diagnosed with an illness and being told that the partner has only so many months to live.

My husband, John, has lung cancer, copd and many other illness; along with congestive heart failure and he was given 6 months to live last October.  At the beginning I was hearbroken, waiting and praying or meditating.  Then the months moved on and I wondered why...why do doctors give time limits.  I contacted the professionals on this Vitrual Hospice site and they made things clear to me.  Some illness are diagnosed differently and with my husband they go through ups and downs and this is the hardest part as he can look and seem so good one day, then wham...he hits bottom.

Fortunatley we have a good doctor who comes and sees him in our home, the health care nures are wonderful and they offer much good advice and help.  We have home care 3 times a week and I get 4 hours respite once a week.  Home care is for his bathng and bed changes all much appreciated as I find that the past few weeks since I unfortuantely was diagnosed with cellulitus, due to a fall and scrath on my leg, I had to go to hospital every day for Intervenous treatment and getting help for John took a long of work, now that I am home with antibiotic treatment and not having to go to hospital I feel weepy, tired and asking...when will all this end.  Then I feel guilty but reading all the messages and information on this site I get over it until another bout and know you will find the same kind of support I have received from all the caregivers on this site.

Please keep in touch and share and we all benefit.

Take care.

Xenia
 
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Reply by Nouce
24 Jun 2014, 12:33 PM

Thanks, Xenia,


It's been my experience, first giving care to both of my elderly parents who died within the past year, and throughout that whole time for my husband, that my own physical situation can be really problematic: headaches, back pain, a celiac disease diagnosis. Sometimes it seems my body is screaming at me (or with me!).


I'd also welcome hearing how primary caregivers relate to family. I have two adult stepdaughters. I try hard to keep them informed, and have asked them to come and help from time to time (they both live five hours away). They do want to help, but I don't think they understand what is really happening (or perhaps it's too hard for them to accept).


 


Nancy

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Reply by Xenia
24 Jun 2014, 3:34 PM

Hi Nancy:

So good to see that you are receiving help in many different ways from all on this message board.  All of us have travelled this bumpy road or are travelling it now and there are so many twists and turns, road closures, speed bumps and all types of problems that are hard to take on alone.

As primary caregiver it is difficult for others to understand the difficulties of caring for a loved father, mother, step father or other family member.  As a wife it seems that we are deemed to take on this job and since we have often been the strong ones not asking for help during good times and bad when confronted with a serious illness family may not or cannot understand the changes in their mother - father.  It is hurtful when family does not offer help, is it because of their fears or seeing their parent pass, are they too busy with their own family and children.  Is it indifference, this is something that they can only answer and perhaps may be put to them by a good friend or your spiritual adviser.  Perhaps they need to talk to someone not connected and have the insight into how to get them to be part of your husbands care.

We are fortunate to have children who are caring.  Why?  I ask myself, as I was a hard task mother as my husband and I had some difficult times when he was drinking.  He gave up and became sober seven years into our marriage and has been sober for 51 years, we are married 58 years.  The children are supportive of both of us, they visit, take me out on my respite days, sons in law come and visit, grandson visits as often as he can.  We have 3 daughters and one son and the youngest daughter seems to know how to delegate as this is her way of facing dad's passing.  The oldest who lives in our city does so much for us and has a way of knowing what needs to be done in the home, setting up our home for dad, drops in with a coffee for dad and will do some chores, the second daughter does our shopping as she works in a Grocery Store, our son is my chauffer who drives me when needed to appointments, etc.

Don't get me wrong, there certainly are disagreements but they settle it, perhaps because they have all faced illness in their own lives with husbands or relatives and have become more in touch with the realities of having family and support of each other during good times and bad. 

Some days my anger is turned inward and I resort to bad thinking but forgive myself as it is part of caring for my husband.  I try to keep on top of my feelings and have good friends I can share my doubts, fears and sadness with and this helps me get through eatch day..one day at a time.

Take care and be kind to yourself, I am slowly learning this lesson and it only took 78 years, my age...at this time.

Regards to all.

Xenia 
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