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May 13, 2018 · Personality Change of Kidney Transplant Patient in Caregivers

Hi cseymour, I can relate to feeling like I was st my witts end with my husbands personality change. He fought cancer until 2015, then was told he was terminal and since then his personality began to change. Now, as the cancer is spreading he is becoming more angry at the world in general and at me. So much so, he lives with his brother now. My husbands is 61, his brother 71. I tried one on one counseling for his moods and anger, joint counseling too. Anti depressants. Cancer group support. Organised and supported outside interest. He stopped those 5 months ago. I felt so bad for him, his unhappiness, feeling cheated on life etc but when he started in on me, it scared me. And I can’t live in fear. Or be mentally and emotionally abused. He use to show remorse. Then he stopped that. He’s suffered a lot physically and has been on pain meds for a long long time. And I think that changes the person. Sometimes. He’s even mad at God. Try to take the best care of yourself that you can. I highly suggest talking to a carer counsellor. I let it go on way too long. I’m trying to get on my feet, looking for work, moving to lower cost rental. It’s been a shocking upheaval and by the grace of a God of my understanding, I haven’t fallen completely apart or become ill myself. Take care, talk to professionals, get support, find respite somehow, somewhere . Seek options. Stay healthy. All the best.

May 3, 2018 · Saying HI to all our caregivers! in Caregivers

Dear Indianascott, I’m so sorry to hear of your stroke last December but so grateful you are still with the Connect community. I haven’t participated in quite a while as my move from country to city with my terminally ill husband resulted in him becoming very ill both physically and mentally. He now stays with his brother and visits me. His disease appears to be spreading to his brain now and lumps are appearing elsewhere. The doctors gave him a timeline of 6 months in 2015 and he almost died twice this past December. He came to visit last night, unfortunately he had an anger eruption and left, which is good in a way because he scares me when he gets verbally aggressive and abusive. Friends who know I’m looking for work say I should get into caring but I remember you say, “ in a New York minute, NO”, that’s how I feel. Right now I feel gutted and beaten. I’m tired of living on the edge of death with my husband who lashes out. I just feel wiped out inside, I don’t think I have the motivation or energy to run out of a burning building. I want to be part of life. I feel caring has taken so much outta me. The thought of dealing with sick people makes me want to run away. I too, became a carer out of love and devotion. Thank you for sharing your past words are helping me to connect today. I feel so lost and too tears to go out in public. Wishing all Carers strength and comfort.

Mar 19, 2018 · Meet fellow Caregivers - Introduce yourself in Caregivers

Hi, I’m mnina. I cared for my grandmother for the last year before she passed from Dementia and other complications. My husband I have cared for during the past 4 plus years, he is in palliative care with terminal cancer, he has almost passed 4 times in the past four years, with 2 of those times being just this past December. I’m an expat American from California, living in Australia. In the wee hours of the night, when I felt so alone and scared , I stumbled onto this incredible support system through the Mayo Clunic newsletter I received by email. IndianaScott was so helpful as were the others. I could say what I was feeling and didn’t feel so alone and guilty. They are hoping to set up something like this here by 2019. Unpaid Carers are worth 2 billion dollars to the government here, so they are investing in services. We do work! We work 24/7, unless we have respite. I don’t even like when I hear people say “ so how have you been out of work?”. That’s a fallacy that needs to be changed. I look forward to being a part of this community and thank you for being there. I wish you all peace and good self care, on this very difficult road, one day at a time.

Mar 13, 2018 · Caring for Two in Caregivers

I find at times, my husband would respond like a child, demanding and so very self absorbed. I understand he couldn’t help it, it was part of his illness. But that did not give me permission to not take care of myself or my needs, I had to be responsible for my own sanity and well being. It was like dealing with a child. In a kind way, I had to take care of myself. I had to accept that my husband was changing into a different person, one who didn’t think of me. Illness can wrap some people up. Now that we have moved back into the city, he has more contact with other people, more activity’s through associations that provide support. I learned to accept his childlike behaviour, at times, and still act as the adult, responsible for my life, and my well being. Every day I have to think, how is my caring today going to affect me? Did I set aside time to do something that lifts me, aside from sleep! This year, I finally got to my own medical appointments and I’m making time to see friends. I’m more tired but it’s worth it. Taking care of myself was and is the hardest part for me. I had to be trained by regularly speaking with a Carers support group and counsler and I’ve gotten much better than I use to be. I can now see the forest from the trees. Getting regular support made a huge difference as I learned to Let Go in a healthy and appropriate way. Wishing you a day of peace and self care.

Mar 13, 2018 · Caring for someone with dementia / Alzheimer's in Caregivers: Dementia

As a Carer, I find I have to make so many decisions in a new arena. It can be mentally exhausting trying to do that right thing, which can change from week to week or day to day. Sometimes my husband behaves like a child, his world has shrunk so much in his illness. I too believe in keeping it simple and sometimes having to steer things away from stress and or conflict. For me, it’s ok because I assess each thing individually and it’s an option to make decisions for my sick husband, that would otherwise bring heart ache. Most of all, I try to take care of myself, which I’m not good at but getting better. After 4 years, I’m finally starting to get my own medical check ups, I’m 61 and it’s taken 4 years to bring my own self care to light. Wishing you a peaceful day and time to take care of yourself too.

Mar 12, 2018 · Caring for someone with dementia / Alzheimer's in Caregivers: Dementia

Good morning, I lived with my Grandmother during her illness of Dementia/Alzheimer’s, she would get glimpses of clarity, where she understood that her favourite granddaughter at times, appeared to be a stranger to her, she would phone my uncle and ask, who is this strange woman living here. When she had these moments of insight, it brought her eyes to water as she looked at my with great guilt. She knew she had no control over this but she felt guilt anyway. Those moments of insight passed as the disease took over. She did her best. As I, with what little I knew then. We have more resources now . Lack of control for my husband definitely brought on anger. Allowing him to make as many decisions, however small, helped, kept me from Taking Over Too Much and helped him settle. Each day I kept and still do a gratitude journal, to help me stay balanced in the toughest of seas. It helps keep my mind and eyes open to the good things, however few in each day. As a Carer, I try to stay strong, to know when to rest, walk for exercise and just sit and take some slow breaths. This is the most challenging chapter of my life. I wish you the best, one day at a time.

Mar 12, 2018 · Caring for someone with dementia / Alzheimer's in Caregivers: Dementia

Hi there, I found that when I came up against my husbands illness, his state of mind or headspace as I like to call, his mental capacity to acknowledge or accept what was going on, he was incapable, at first. New information had to be broken down into smaller chunks and my expectations had to be guided by the medical professionals. After having private talks with them to discuss what was going on in the house, they helped me navigate through what was a potential land mind. I quickly came to realise , I was the first person to go through this kind of thing. The medical professionals asked me questions, and offered suggestions and choices I could slowly get myself to consider and accept. It’s a process. Talk to people who can give you options, you’re not alone. That was such a relief for me to know. The more questions you ask, the better. Speak to your Carers Association as well. Have patience with yourself too. Each day of a Carer can be full of new challenges to consider, take good care of yourself in the meantime. Wishing you hope and clarity.

Mar 2, 2018 · Dealing with anxiety/guilt over spouse in LTC with Dementia in Caregivers: Dementia

Hi, Guilt is such a good topic to share about as most of us have that in common. “The Pull”, that was mentioned, I so relate to. I haven’t experienced that anywhere else in my life, as when a loved one needs you. In the world of a carer, we develop that acutely and instinctively. But sometimes my radar of caring is off track. Sometimes less is better, because life doesn’t stay the same, I tell myself, my caring needs to change and adjust too. And it is so hard. I too, had my group of concerned friends telling me “to let go, give him to his brother to care for now, you need to get on your feet.” I didn’t know I was “ off my feet”. My grief comes in waves, I force myself to do things sometimes that are no longer related to caring for my husband. Today I did 4 hours volunteer work outside. Everything in me didn’t want to go. I went. I’m glad I did. I only feel a little bit. These things take time. Take a step in the right direction I tell myself, don’t fall into “The Pit” of Guilt. Wishing you all a good day , with comfort and peace.