I need a caregiver helper.

In all the busyness and worry about whether we are doing our best for a loved one it is easy to forget isolation-creep. As Kayla is cleaning things long ignored, filling baskets of unused items for GoodWill, or spending an hour in the garden while we marvel at the efficiency of the weed puller recently purchased, I have come to realize that her presence and the stories that she brings about her young family are also important. We are social beings. We need each other for more than transactions. The decision to have extra hands on board came after a bout of depression. When going to shopping or appts, the thought of putting on makeup seemed impossible as it took all my strength to shower. I do not discount a wonderful doctor who let me talk it out even though psychiatry is not his discipline or the meds (which I no longer need). But also key to recovery has been Kayla, someone caring and funny, who listens, responds and remembers the conversation. Yesterday, there was an errand to run, and I put on makeup for the event. It felt great. If and when we run out of projects, I have proposed a work day where we shop or go to lunch. Always remember, if you collapse so does the plan to take care of your loved one. What you do for yourself is not selfish, it is realistic and loving. GloRo

So far so great. But I learned something valuable. The first week I had her clean the house, change beds and do laundry and take S to and from the gym in between. She was not happy. Said this is not what she usually does. More with the MCI person. This week I stayed in my study and took care of calls and bills and she worked solely with my husband- supervising him making his eggs- a process. Then she did is brain games Constant therapy with him. They talked and she helped him get his gym bag ready then took him to the drugstore and the gym. I was out all day. And also she did some housekeeping and totally cleaned and resealed the shower-and changed our bed. She was much happier. And so was my husband. He loved the attention and needed that time with her.

It's been 3 years since my hubby Tom was diagnosed with frontotemporal dementia ( he's now 63) and I'm finally getting the help I need before i "lose it" My patience is much better that it was a year ago, And now that I know what to somewhat expect, I can start doing the things i used to. I wish he would be joining me to do those things, but this journey makes it too difficult. I don't mind doing the daily tasks by myself anymore, or doing practically everything for him but I need a break and "find" myself again so I'm getting some respite/relief care that is much needed. I hope "MY" journey with this caregiver will give me as much joy and comfort as your Jewel did.
BIG hugs to you!!

Big hugs back to you. I hope you feel some relief soon. Hugs and hugs.

Hi All, There are so many phases to caregiving that I have given them names. First is the 'pants-on-fire' phase with the diagnosis that brings panic. I'm not sure those new to futures turned upside down believe calming words. Then, there is the "boob-to-medical expert" phase, where one comes to grips that there are no answers, only strategies. When one finally gets to "the burnout" phase, we must dispel the idea of being superhuman because now the caregiver needs a caregiver. I have found in the 'caregiver-needs-a-caregiver' phase, what is mainly offered to save us is home help medically focused as opposed to practical help with all those things that have been ignored. Of course, that is always individual because none of us have the same situation. Like varieties of dementia, there are varieties of needs. -- I am four months into having lovely Kayla in my life for 4-hours twice a month. Her duties are as varied as the ways dementia presents itself. I keep a running list. Things of imminent need go first, but she can pick and choose. I don't want her to suffer from burnout. I will not minimize what her physical efforts have meant to my sanity, but I have discovered that her cheerful presence and our budding friendship mean as much. -- With a clearer mind, I have found a new reserve of patience. The sharpness in my voice has softened. And, most important,
my husband is benefiting from the happy vibes I am putting out. -- Good Luck with finding a Kayla. GloRo

Love this. Yup I’m in the caregiver needs a caregiver stage and I need my voice softened.

Gloro, you have hit it on the head! I am in the boob to medical stage and it seems my everyday is filled with analysis of what strategy for our lives will work today. It is such a chronic burden that my husband is recognizing my lack of interest in any romantic thoughts of him and I can see it hurts him so I keep reminding myself that I must focus on joyful moments and love while he is still “here”
I honestly don’t know what life will be like when I need physical help for him, as that is the fear I still cry over at night and we have not reached that level yet. Thank you for your insights!

Hugs to you Boppi. I’m often crying with you but embracing what joy we have took Gloria did hit the nail

To the lovely people in this chat, thank you for your comments. I am starting to feel like I have a fan following. Six months ago, I told my husband that I wanted to die. A sane person would have realized not to lay this weight on a person with dementia. His comment in return was that he didn't understand because he was so happy. It was a confirmation that we live in different universes, and while my workload was making me nuts, it kept him in a place of calm and joy. That's when I went on meds and started posting on the Mayo forum for caregivers. With a change of perspective that my needs were important, I have surfaced from an awful wormhole. I share this because I want to remind you how resilient we can be. Heck, I want to remind myself that I am resilient. -- Today, my husband joined me and my Writing Group for a luncheon I planned for my 87th birthday. Is it weird to celebrate an 87th birthday? Well, like those supposed rules, we are all searching for to get a handle on dementia; who gets to say what is a good idea? Try something new. Put things that might be helpful into place before there is a frantic search for a critical need. My boy was at his peacock best at the party. He did his best to be the comic wit I married. Nobody seemed to mind that he asked where they lived or what they did several times. -- Yesterday is gone, and who knows if tomorrow will bring calm or mayhem. But today was really, really good. GloRo

"Is it weird to celebrate an 87th birthday?"

More like a rare privilege.

A friend of mine turned 87 in April. You better believe she celebrated!