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Reply by KathCull_admin

12 Feb 2014, 12:44 AM

Hello Frustrated
It was good to read that you have been able to get out with family and friends. Your words allowed me to ‘feel’ the hugs from your grandchildren! Touch – the warmth of an embrace or a massage really do bring healing to the body and the soul don’t they. However I know they will never take the place of your husband’s words or touch on your hand. Have you found that touching him brings you and he some comfort?
Katherine

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Reply by moderator | modératrice

13 Feb 2014, 2:30 AM

Hi Frustrated,

Good to hear from you. I agree that getting out and about can really help. Both physical activity and conversation can help re-energize.

Katherine, I like your question of whether touching him can bring comfort. For me, I guess that would depend on the way that it is received. How about you Frustrated?

Colleen

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Reply by frustrated

13 Feb 2014, 2:50 AM

When I hold his hand, it brings comfort to him, but his hands are so soft and weak that it hurts for me knowing how strong and rough they used to be. I do give him a back rub every night, but once again, it is for his comfort. He doesn't have the emotional or physical strenght to even think about my needs. And most of the time I am ok with that and understand. Sometimes though I also need someone to let me cry on their shoulder. I do have good friends to let me do that. But it still isn't the same as having one's husband there for support. I know I am luck that he is still with me and that it will be so much worse when he is gone. But the gradual loss has been hard. Watching someone you used to lean on become someone who is very very needy.

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Reply by moderator | modératrice

13 Feb 2014, 2:56 AM

I get that. Marstin has often written about the reversal of roles. I'll invite her to this thread.

I'm so glad you have friends that you can lean on.
Good night for now.
Colleen

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Reply by marstin

13 Feb 2014, 4:05 AM

Hi Frustrated,

I truly do understand how difficult this is. When you've had someone who was always your strength slowly become the dependant it is very tough. Not only do you have to witness the physical changes and deal with their needs, you find that the person you loved has changed so much emotionally too. No longer can you turn to them for their advice on things or lean on them when you're feeling down. Life as you knew it has changed so drastically and every decision is your own, not a shared one. I don't think we truly realize the balance in a relationship until it shifts and becomes almost one sided.

Although it has been a year and a half since I lost Len, I can still clearly remember the decline in his health and the pure love I felt for him as we went through our final days together. I don't think I miss him any less now and often I close my eyes and remember him hugging me so tight. I think that is the hardest part, not feeling their touch or being able to turn to them when things are bad. I miss the day to day conversations and knowing that I was loved unconditionally. It does get very lonely.

Still though, I have survived this long and know that he would be proud of how far I have come through many challenges and let downs. Often when the world seems like it's against me and I don't think I can handle any more, I hear him say 'You can do this Hon' and I push myself back up and carry on. We find a strength deep inside of ourselves that never existed and an incredible understanding of other's pain. Through all of this emerges a different person. One with more knowledge, more compassion and a better understanding of life. As you've probably read on here before, you find your new normal.

I often think that I would never have discovered the wonderful people that I have met on here had it not been for a painful situation. I have found friends, support, and so much understanding. This all helps to keep me balanced. Just being able to be real without putting on a false front to make other people comfortable brings so much comfort.

I hope you continue to share your load as it makes it so much easier to go through this time in your life.

Hugs,
Tracie

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Reply by Aphasia Sufferer's daughter

13 Feb 2014, 11:58 PM

Also, the transition in the relationship is just the initial stage of ending up alone. And we know that. And it's not a transition that we choose: the illness of our partner forces that on us. So a lot of caregivers experience anger. There was an interesting relevant line in the tv show "Downton Abbey" recently. Mary the main female character has lost her husband in a car accident and been left as a single mother with a large estate to run. Before she married her husband she was icy and proud and quite unapproachable: she was not vulnerable. A new suitor tells her that she was lucky to have found such a great love with her husband. She says she isn't sure; that he had changed her and that if she hadn't been changed she would be much more able to handle the hard world alone now. This is an incredibly emotionally accurate scene. The person left behind had worked so hard at being one of two, one of a couple and now must function all those years later like a person who has been alone and independent and has had years of practice. We need to find people during this time of transition who accompany us, hang out with us, walk our walk with us without dominance, yet who have a quiet assurance that we'll find our own way.

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Reply by Aphasia Sufferer's daughter

14 Feb 2014, 12:18 AM

Hello.I think that Brayden is on to something here. You can explore finding a person to come and visit your husband as his friend in many ways --- home care (paid for by the state/province etc.) is one option but there are others. A visit from a church visitation committee. My mother simply went to a nearby Roman Catholic church and found a priest who recommended a recently retired parishioner who came to visit my grandmother three times a week at different times. Anglican and Episcopal churches have a group of trained parishioners (sometimes called "lay parishioners") who are trained to visit and accompany people who are in difficulty - short or long term problems. An unemployed relative or cousin can often be persuaded to visit regularly.

Your local diabetes association will have groups for caregivers. These groups can be really really helpful as the members are all dealing with the consequences of the same disease. My mother suffered from Aphasia. The local aphasia centre had never had a support group for caregivers. I persuaded them to try. They did. My dad is still going after 6 years. My mother died last month, but my dad is still going. They originally met WHILE their spouses were at the Aphasia Centre for a program - so there was no extra time required. Later, they started meeting at a regular time each month.

Explore respite stays for your husband at a local nursing home or other place. If he has to manage for a few days with trained caregivers in an institutional setting, he may see his problems in a different light - he may be forced gently to learn to use the wheelchair, to have help going to the toilet, he may be encouraged to be more polite to those helping him.

I think that the "enjoy every moment" is far to rosy and broad brush a perspective to be useful. You can't enjoy moments when you're being insulted and shouldn't. You can tho get some help with the suffering that comes from that harmful behaviour. And that allows you to actually enjoy the few happier moments that do come. I did't enjoy every moment of being punched, kicked and bitten by my demented mother. I did enjoy the moments when she let me help her, when she smiled when I arrived, when we laughed about silly things, when she held my hand.

Cathy

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Reply by KathCull_admin

15 Feb 2014, 3:06 AM

Hello Aphasia Sufferer’s Daughter

I, like you, am relatively new to the Virtual Hospice Discussion community. This thread was started by frustrated just over a year ago – and reading the postings I see how much support has been shared in that time.

I am not a Downton Abbey watcher – but I had heard about the death of Lady Mary’s husband through friends and facebook. I found your analogy very insightful.

You talked too of finding people to accompany us and walk with us – so critical wherever we are in life isn't it. I have found that our warm, virtual community members – do just that. We often don’t need to be told what to do; we need someone to walk with us, to listen to us and hear us and support us. And although our circumstances, feelings and thoughts may be similar – we are unique beings - no one is the same. So what is good for me may not be for someone else.

That is not always easy for me – I am great at wanting to ‘fix’ things. A good lesson taught by a wonderful teacher has stayed with me over 20 years. I walked into a patient’s room and saw that she ‘looked’ to be uncomfortable. Without a word or question, I began to fluff her pillows and fix her blankets. When I finished I said, “Is that better?” She responded, with kindness, “I hope it is for you!”

Did you get a chance to look at eKIM’s threads? Self Care for the Caregiver and the Child Within or Can a caregiver ever truly be carefree, even for a moment?

Katherine

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Reply by Brayden

15 Feb 2014, 6:12 PM

Dear Frustrated,

I am so pleased to read how well you are holding up under your difficult circumstances. You are a good model for many others in that you have not become overly negative. I would suggest you keep holding your husbands weak hands but while doing so think back of all the great things those hands have accomplished over the years and visualize those moments. Feel the pleasant touch that they gave you. It should warm your heart and carry you through the day. Even though you have good friends who listen to you, they cannot replace your loving husband. You have already started to develope a new identity and this will carry on for some time to come. Unfortunatly it is not an identity that you would have chosen but one that you will have to adjust to. I am so encouraged by your progress and please keep posting here to hopefully get much positive feedback. Blessings,

Brayden

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Reply by Aphasia Sufferer's daughter

15 Feb 2014, 7:10 PM

Hello
I speak directly and in good will. I hired two lovely women to visit my mother while she was living with my dad and he was providing 24/7 care and suffering some anger from my mother. My mother is dead. One of the two women continued to reach out to my dad when my mom went into the senior's home and reached out to him even this week. My dad's hurt from my mother's anger was relieved a little;he was given some hope; he is living in a community of care partially created during her suffering. He is proud of the efforts that he made and of supporting efforts we made to help my mom.
So you are right; it was helpful to everyone to create a community of care. And it still is. Sometimes a fluffed pillow is all we can do and I am very grateful that my dad and my mom received the care of others with good grace.

CCatherine

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