What is Caregivers
A voluntary caregiver is the modern terminology for an unpaid spouse, relative, friend or neighbor of a disabled person or child who assists with activities of daily living and ass...
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My wife was diagnosed with M.S. in 1991.
After the diagnosis, she said to me that if I left her, she would understand. That was the day I made a promise to her that I would be right by her side, whatever the future was to bring us. Very difficult times were to be had over the years. First of all,dealing with the depression stage.Next was slowly losing use of her legs. She started using a walker for some support,but that was only for a short time. She had to spend most of the time down in the family room as it got too difficult to carry her to the upstairs bedroom. She would insist on not giving up any chores that she could possibly do herself. Our laundry room was downstairs, so she would crawl on her hands and knees to attempt to do some laundry, this was so sad for me to watch. I would follow her in to help,but she didn't let me, saying she could manage it herself. After a few falls,she realized it was just becoming too hard to do. She tried so hard to be independant for as long as she could. The next step for her was a wheelchair, this was devistating for us both. Nights in bed (alone) there were so many tears shed for her. As time went on, she became weaker and weaker. Hospitalzed many times with pnemonia,each time taking a toll on her strength and health. We sold our house and bought a one level that was retro-fit for someone else who also had M.S. and was moving out of province.After having to do some more renovations to the home to better suite her needs came a time for a power wheelchair, custom made for her (special seat to try to prevent sores, back and headrest as she could no longer hold herself upright, tilt to change positions etc.) But eventually she did start getting some sores and had to spend more time in bed. Had to purchase a lift,commode chair, special mattresses for the bed. She was totally dependant on me for all her needs,medications, toileting, showering, even had to brush her teeth for her as use of her hands was totally gone. After many more times with pnemonia, she was so weak she could not fight it off one last time. I lost her on March 15,2009 at the age of 58. I'm having such a hard time with her passing, after so many years of caring for her with absolutely NO regrets what so ever. If I had to do it over again for her I would. She was my love. But now my life has taken such a turn, I don't know what to do with my time except to spend a LOT of time pacing around the house crying,crying,crying. I can't get up in the mornings to go to work (have a very understanding employer, told me to take all the time I need) Have been seeing a councelor once a week. A very hard time as her birthday was last Wednesday and our anniversary is this Wednesday,a double whammy!!!!! Also a couple of weeks ago, my daughter and I had to to pick out a monument for her site "killer" I know it's going to take a long time to get use to my loss,but hope time helps (as I'm told) and someday,somehow get on with the life I have. Anyone else in my situation.....I would be so grateful to hear from you. Posted on 09/15/09, 02:09 am |
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I am so sorry to hear about the loss of your Wife.
And the way you feel since losing her is completely normal. It's still early days, it's only been six months, you need time to grieve. You've been caring for 17 years, and now that's come to a halt, and you feel 'lost', you've lost that role in your life that's kept you going, and understandably you're feeling inconsolable. It's great you've got an understanding employer, and maybe you need more time off work, or maybe work helps for you. The Counselling is good, it helps you to talk things through, and sometimes it's good to do that with a counsellor rather than a family member. I've been through a similar situation to you, although I have to say the person I cared for, for nearly nineteen years hasn't passed away, but my caring role stopped very suddenly due to my ill health, and my whole life, my reason for being here just felt apart, and like you I would just mope around the house crying, it felt like my heart had been ripped out, and I felt so 'lost'. Obviously it's doubly hard for you, because you're also coping with the loss of your wife. It will take time, how long, I don't know, but it will start to get better. Give yourself all the time you need, take it one day at a time,, on really bad days, take it an hour at a time. And remember, you're not alone. Take care, love Maggs x 
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Thank you maggsb,
I'ts hard being a caregiver to loved ones especially when you suddenly lose them. I have to give thanks for the homecare people here for taking such care for her while I was at work, they were such a help to me knowing she was in good hands. But especially Marilyn's sister Linda,who was always there for us to help out when we needed her. She would come over to our house to give me some time out.....golf summer, darts winter. She will never know what that meant to me. It was the short breaks I really needed each week. she's the best. Family is so important to everyone who needs them at times like this and you have to reach out to them for support and help when you need them the most. I hope you have that. You're not alone, we're here for you when you need someone to talk to. Hope things improve for you.
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Thanks Wayne, that's nice of you to say.
I'm afraid I'm not very good at asking for help, I tend to bottle everything up, and I am trying to change that, but it's quite hard when you've been like that for years. Hope you're doing ok! Love Maggs x
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Hi Maggs,good to hear from you,
I'm a lot the same....keeping things bottled up inside....taking things as they are dished out to you. But now it's so different, I have to ask for help. Lots of things I just took in stride in the past. Losing both grandparents,Mom&Dad, uncles,aunts,cousins,and even pets.Death is inevitable for all, but when it hits so close, it makes me rethink about keeping things inside. Going for counceling helps a bit. I made some calls and was able to have my appointment to see a psychiatrist moved up to Monday 25 Sept.instead of Oct.26. Hopefully he can give me a low dose anti-depressant as I don't like taking meds. My doctor gave me something I had a bad reaction to so I want something not too strong, but I do need it. Just makes things worse not to talk. Cry when you need to, it's part of healing. You take care of yourself and please keep in touch. Wee all need support, now especially. Love and Hugs, Wayne
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Your post was so touching, such a testament to love that I feel
totally unqualified to respond. You are right, your life will never be the same. It will always be different. But that doesn't mean - after you have grieved enough- that the rest of your life can't be happy and meaningful. I think you are doing all the right things to help yourself. Find something to smile about today. Prayers and blessings.
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Thank you Jamr41,
Please don't ever think that you are "unqualified to respond" Your response to me means a lot. I really hope that someday....after grieving,my life will somehow be happy and meaningful as you stated to me....I will try my best. Your advise to me to"" find something to smile about today" really made me realize that life has to go on for me, and now I try to pick out little things, like my cats playing, seeing hummingbirds feeding (Marilyn use to love watching them outside the window). Little things like that will give me a little smile and somewhat help. On Marilyn's Monument, there is going to be a hummingbird hovering over a flower, an open book with her time here with us on one side, and the time I was here on the other side. There will be two broken hearts on the corner for our our son and daughter who miss her so much. We are a really close family. Thanks again and same back to you 'find something to smile about every day
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I use the "smile " advice myself - and remind myself to look for
something to make me happy. A walk with my 4 yr old grandson did the trick last week. We found lots of things to get excited about. A huge spider's web by my clothes line was interesting to look at. The smell of freshly combined corn fields brought back childhood memories and more smiles. I find the more time I can spend re-discovering the world, the better, happier I make myself. I need these daily tricks to keep going as my husband disappears into the abyss of Alzheimer's. Keep looking - you will find life still has a lot to offer.
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A song came on the radio today, it was a song that was our song at our wedding and I also had it played at Marilyns funeral The song is "Three times a Lady"by the Commadores. Needless to say....more and more tears today, again. These ups and downs are really hard to take.
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I read your post and had to think about it. My mom has been in a wheelchair since she was 7 due to polio. But she was a very independent person and found a job working at the hospital(mind you this was 60 years ago( she married my dad and had me. I always admired the love and dedication between my parents(they were married for 48 years) My dad would take my mom to work and then take himself to work. My dad had heart trouble for many years. My mom is 80 now and needs help with daily living, bathing, eating, etc. But between my dad and I we have been able to keep my mom at home. And my dad had 2 open heart surgeries to boot. We lost my dad in Nov 2008. But it still amazes me the love between the 2 of them. I am taking care of my mom now as I know that is what my dad would have wanted. So, don't be ashamed or regret what you did. It is a testament to true love. That's what songs, books, movies are made of. I'm sure it was a rough road. As is mine but I truly believe it's a road worth traveling. My mom would do it for me. So, it is my turn now. God Bless you and hope you are doing well.
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Keephealthy, thanks for reading my post. First, my condolances for the loss of your Dad, I'm sure you both loved him dearly, and it was so nice to hear that he was there to care for his loving wife over so many years. And for you, I admire you for being there for her also. I know how hard it is to have to go to work daily, and then come home to your second job ( if that's your case.....it was mine). I had homecare come in weekdays for some help while I worked (came in to get her up, showering etc.) but that was limited.Evenings I had to get her ready for bed myself.Weekends I was on my own also as funding for homecare was limited (only so many hours per week).It's a HUGE responsability to take on the task of taking care of the ones you love.
You said to me in your post "dont be ashamed or regret what I did" I don't know exactly what you meant,but I've never been ashamed or felt regret for the care that I've given to her over the years. It was a promise I made to her the day of her diagnosis.I would do it all over again for her if I had to. Even though the one you are caring for doesn't tell you or show their appreciation for what you are doing for them....just look deeply into their eyes,,you'll see it.....I have. There were some occasions, after I got Marilyn settled into bed for the night,as I was leaving the bedroom she would call me back and say "I Love you, and thanks for taking care of me" You cant imagine what that meant to me. She passed away on March 15. I LOVE HER, I MISS HER, I NEED HER BACK. Take good care of your Mom, and I hope for all the best to you and your Mom Big Hugs to you and your Mom Wayne
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