@deniseactive 5 hours, 7 minutes ago
Oh, gosh, Kaz, thank you so much for all you do here for us.
I think that’s the huge challenge we all face. It feels like it all must be for our caree, who needs so much. And, yet, if we disappear, if it’s not at all about us, how do we continue?
You are hope, Kaz.
it looks very cozy! Nice windows!
I bet it’s cozy. But you know what is even cozier is how the expression on your mom’s face makes me feel. She looks very peaceful and clear-eyed. When you think back on how much she has gone thru in the last few months, it is staggering to see her look so composed. Both of your folks, and you as a united family, have fought the good fight. They…[Read more]
Well, Jan, you just made me cry. Thank you, friend. You’re the best.
This is incredibly frustrating! I can’t understand why they don’t look at each patient and then decide what he/she needs. It’s awful you have to go through these on top of everything else!!
Please keep us posted as you can. I’ve got everything crossed that you get what Gregg needs.
Thinking of you @kaz! I hope all is okay for you and Tony.
Sort through your coats–which will you keep? Which will you donate? Which need to be washed or dry cleaned? Change our seasonal shoes, switching flip flops for boots. Make sure your mittens, scarves and hats are in good shape. If not, toss and make a note of what you need to buy.
Spend at least 15 minutes organizing and straightening your front entryway or hallway. Put shoes away, get out your winter coats, find a way to keep your hats, scarves and mittens. Create a system so that hats, coats and shoes have their own place and space.
After you’ve spent time organizing, share an update with us here. What did you do? What t…[Read more]
Every Thursday, we have a care plan ready for you so you’re ready on Sunday to implement your plan.
Each care plan also includes a new intention to build on what you do well. In our care plan, we define well t […]
Denise wrote a new post, Webinar Follow-Up: How Will You Find Time in Your Day? 2 days, 13 hours ago
Yesterday, during our free monthly webinar, I shared 22 tips to find more time in your day. (Miss yesterday’s webinar? Watch the archive, Finding Time in Your Day.)
I’d love to know: Which tip will you use to […]
You said something like “Make things easier for yourself” and “Delegate” My son has told me, for some time now, that it would be a good idea to have groceries delivered and not just when I have the flu or a broken ankle. He says if I had groceries delivered, when someone comes over to give me a break, I can actually go someplace other than the store.
I said ” I like to actually look at the meat and I Iike to see any new products in the store and squeeze the fruit to see if it is nice and ripe” . As if having food delivered would cause me to be banned from the store for life.
Now,I think I will start having groceries delivered and drop in occasionally to see what’s new, look at the meat, see the produce and especially squeeze the fruit.
Spend at least 15 minutes organizing your bills and receipts and your caree’s. You might file, shred or record paperwork. You may organize a system so you have a place for all your bills and receipts so you pay what’s due before it’s due and so you’re ready for the tax season.
After you spend time organizing, reply with your update. What did you…[Read more]
We’ve talked a lot about the loneliness and isolation of caregiving.
Chris (@oscargal) shared an article on our Facebook fan page today with the headline, “Unpaid caregivers say they are abandoned by family and […]
I am no longer an active caregiver, but I still feel the residuals of caring alone when I had 4 brothers and other extended family members that could have helped. They all lived more than a thousand miles away, but seldom even called to see how things were going, let alone making an effort to support or relieve me. Sometimes when situations got really tough I even felt resentment towards them, probably a little jealous that they weren’t there helping me cope. All I needed some times was an ear to listen and a shoulder to lay my head on.
Abandoned? Oh yeah. I listen to so many of you here tell about being the only one of a family full of siblings that is doing the real hands on care, and it hurts my heart. I honestly know what you are feeling. I can feel your exhaustion. I’ve been in that quandary of what to do next and how to get through it all.
It’s been many years since my husbands died, my precious best friend/aunt, my Father and lastly my Mother. I still miss them terribly, but I also miss the closeness that should have been part of the whole damn thing. Watching someone that you love decline and die right before your eyes is the worst part of living. Day by day I have survived and know that I have learned so much from these people that is was truly an honor to be by their side as they left this earthly existence. The others will never know what they have missed.
I don’t have siblings, Sally but I feel hugely let down by my own children. Not talking about me here but it often hurts me to see that not one of them ever feel the need to phone their grandmother who did SO much for them. My two sons live overseas but I feel incredibly sad when it’s Moms (or my) birthday and there is not so much as a phone call. Same for mother’s day – same for Christmas. My mother was a lot more mellow in nature by the time that my children came along and she was always ready and willing to dig deeply into their bank account to help my children when they asked for a loan. (Loans which were never paid back.) When my daughter was still in school – my mom always made endless costumes for my daughter for plays, etc, etc, etc. She even made a stunning graduation dress for her.
And today Mom and I sit here alone and we never get a phone call – not even from my daughter who lives a mere 20 minutes car drive away. It hurts big time! The only good thing is that because Mom now has AD – at least she no longer realize that her grown up grandchildren ever phone her or me.
As you say – we miss the ‘closeness’ so much. When one’s children are young or possibly when your loved family members were still part of your life – in our mind we always thought how much fun it would be in the future as everyone got older, would have get-togethers and what have you but they have all simply gone!
I can relate to the pain which you feel, Sally. I just struggle to understand how close family can actually become so cold and uncaring. I just don’t get it and I doubt I ever will.
Feel abandoned? You bet I do! My sibling even put it in writing, “I won’t help you and don’t ask me to help”. This from the person who used my parents for full time childcare for their entire retirement, until they got too sick and then I had to step in to care for them. When the going got tough, he abandoned all of us….Mom, Dad and me. I resented his lack of contact for a long time. I finally confronted him, asked for help and he finally put in writing that he has no intention of giving me or Mom any help. I was not surprised, in fact, I was relieved to know for certain that he was out of this picture. He has every right to make whatever decisions he feels are right for him. He has enabled me to feel fine with making whatever decisions I want to make about her care. I have stopped resenting him, it only takes away from my own joy. Resentment is like an anchor in your pocket. He has to look in the mirror, my image in my mirror looks fine to me, and that is all I can control.
Sharon, I take my hat off to you that you have managed to put the huge disappointment in your brothers total non-involvement in the care of your parents. You have managed to just take out the positive for you and your parents and I salute you for that! I have come to the conclusion that 50% of people in your life will help you, support you and always be there for you. The other 50% just leave you all alone to struggle on your own as they just want to get on with their own lives. As I said, I really admire you that you have not allowed your brothers ‘no show’ in a far higher, more spiritual way and at the end of the day – your life will be greatly enriched because you did not turn your back on someone who badly needed loving, caring and ‘being plugged in.’ You have my highest admiration, Sharon!
This sounds so familiar that I just had to add my story. I just lost my mother in August and I feel alone and abandoned. My mother was in a nursing home close to me because I was the POA and my parents always knew that I would be there for them. I lived almost 5 hours from them but when something happened to my dad (heart problems and in ICU) I was there as soon as I could be and stayed even some nights with him. My sister was in New Orleans on a trip and instead of coming home immediately it took her 5 days to come back. My dad passed in 1998. From then on when my mom needed anything I was right there. Didn’t matter about taking off from work, or leaving my now ex-husband at home, I was there as soon as I could be. When it came time for my mom (dementia) to have to have 24 hours care I brought her close to me. My sister would come maybe every 2 months or sometimes longer. She was 40 minutes away. She didn’t like to drive I-95. My niece, who both my parents did so much for, never even visited my mom for the 4 almost 5 years she was here. My mom would ask before she got so bad and I would say I don’t know why they don’t come. In her final days, my mom could hardly talk, was bed bound, and hospice taking care of her pain. I told my sister the doctor said if she wanted to see mom she better come now. My sister did but then sent me a message saying mom wasn’t that bad. Two weeks later my mom was gone. So now I am alone with no close family. I am so lucky I have a wonderful church family and many good friends. They are my family now but I still feel alone and abandoned. Guess who is taking care of her estate? You guessed it. I am. Thanks for letting me get this out of my system.
Hoo boy, Anita! It was sad to read how your sister left you alone to take care of all the responsibilities on your own. It’s just not fair and not right but I have heard of SO many people who have gone through the same orf similar situation. At the end of the day I think we just have to accept we can only determine what WE are willing to do and for those in the family who don’t care at all – we just have to learn to let go with that sense of enormous disappointment and just continue to be who we are.
Yes, I know what it’s like to be a sole care-taker. It is heartbreaking to put it mildly! Folks write to you who still have husbands, or children or aunts and uncles but what happens to those of us who literally have NO ONE? That is my position.
When we come back from another Neurologist examination – there is literally NO ONE you can share it with. (Am talking here about single carers who literally have NO ONE else they can reach out to or who will email or phone them to find out what the latest examination showed. Darn. It’s such an incredibly lonely place in your heart, in your soul, in your very being that there is no way of being able to explain it.
I would have liked to have added a whole lot more but my sadness, my sense of loneliness and total isolation is SO incredibly deep that if I were living alone – I most certainly would end my life – that is how totally isolated I feel!
But I know I have promised to my 94 year old mom in the early days when she was diagnosed with Alzheimer’s that I would never just leave her and that I would take care of her until she takes her last breath so that is exactly what I am doing. In the end I no longer know just WHO is Colette? Who is the grandmother to my grandchild, Ariana? Just who am I to the many friends who one by one baled on me/us and just disappeared into the ‘woodwork.’ I could NEVER ever have known just how incredibly sad, lonely and totally isolating Moms illness with Alzheimer’s would become a very predictable and set pattern in our lives. (Thankfully for Mom – she no longer knows who has disappeared out of her life.) But I DO know and I often feel as if am totally imploding with this particular task I NEVER asked or volunteered for. But hey, that’s the way the cookie crumbles. It ended up being me so I just have to try to make the best of a sad, depressive, anxiety producing and LONELY situation I could never have dreamt of. Not in my wildest dreams!
I do feel some abandonment from my siblings, especially my two sisters. My brother has always let me know that he loves me and he thanks me for taking great care of our mom. My sisters, well, one of them is completely out of the picture, she is not my mom’s daughter, but she pretty much abandoned me many years ago. I have to think of it as a blessing now because I can’t, as much as I’ve tried, have a “decent” relationship with her. My other sister likes to give gifts, but not of time. She doesn’t come around very often, she rarely calls or texts to see how my mom is, but now that my brother is battling cancer, she goes to see him 4 days a week, so yes I do feel abandoned by her.
The abandonment I feel the most is from my friends, I mean the friends I used to do stuff with, go to the movies, or out to lunch. They used to call but they don’t do that anymore. They don’t understand my role as caregiver and I guess they just got tired of trying. I will text them sometimes and one friend always tells me, OH, I WAS JUST THINKING ABOUT YOU! Every time. And another friend will say, Well, you don’t call me so I don’t call you! Did I abandon them by my mom having a turn for the worse?
It’s so strange, when my mom was in the hospital last year all these promises were made from my sister and my aunt how they were going to help me, blah blah blah.
Thanks Colette for your comments. Lillie I do understand about your friends abandon you. I was lucky most of my friends stood by me but I think it is because they are going thru the same thing. This is a time in your life when you find out who your true friends are. My mom has been gone for almost 2 months and I still feel like an orphan. It still hurts so much and I feel so alone in the world. They say it will get better but I’m not over my dad’s passing in 1998. All I can say is God Bless all Caregivers. You don’t know how all of the feelings unless you have been one. I wish you all the best.
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