Freedom feels so good!!

blacksparky

I’ve been the solo caretaker for my DW for almost three years. We moved back to California after her diagnosis to be closer to her family. Well to say the least it didn’t help me with her. Virtually no support except maybe a short visit every couple of months. Her best friend since the third grade lives about 900 miles away but makes sure she talks to my DW every week. Finally her friend was able to visit us this weekend. She told me to go out for a few hours for myself. I didn’t do anything exciting ( shopping, trip to medical center for blood tests and prescriptions) but it was so nice to only think about myself for a change. Even though I didn’t do anything exciting, here is things I didn’t have to do.
find a parking place close to anywhere , I don’t have to be right next to her just in case she stumbles, I don’t have to make sure she potty’s before we head out, I don’t have to try to interpret what she is trying to say, I don’t have to do anything for these three hours. I love my DW dearly and will be her light and shining armor for as long as I can, but these three hours were so nice.

SDianeL

I hope you can have freedom from caregiving more often. It recharges you. Can you get respite help or is there a senior day care she can attend for a few hours?

Biggles

How great is that, mini freedom. for a few hours. I am still 24/7 and yes love my DH so much but boy oh boy would I ever love an hour or two not to think of all the same things you mention. I haven't had any luck yet with a respite sitter. The family and friends bit is interesting too. We moved to be closer to our daughter, son-in-law and grandchildren. They used to come and visit and stay, now we hardly ever see them, phone calls from our daughter every day, which is lovely but no physical help.

charley0419

https://alzconnected.org/discussion/comment/242222#Comment_242222

boy do I hear what your saying!! Sad but I’m starting to understand it is what it is. Keep the faith

Chris20cm

I can sure relate, after 8 years of 24/7 caregiving with little or no help. Why is it that family members who are caring and compassionate people, make so little effort to assist us and so rarely visit or make contact as the disease progresses? Is it because it pains them so much to see what's happening to their mother? I can't get my head around this. I finally got a couple of days to do some things recently with no one shadowing me, thanks to one family member, as a result of a family meeting in which I let them all know I am not doing it alone anymore. If I get no help, she will have to go to assisted living. I am not good with giving ultimatums but I have reached my limit. Having said all that, I still am deeply grateful for the empathy and the action of one person. Sometimes that's all it takes to make a difference, one person who cares.

Timmyd

I am starting to get success with paid companion care a few days a week. Being able to shop for groceries without having to deal with the stress, noise, and constant attention my DW needs has been heaven. Something as mundane as grocery shopping alone has become the highlight of my week.

The way I think about family is DW is my priority 1, 2, 3 & 4 in life. Caring for her is the absolute center of my life. It is not that way for the other family members. They will say all sorts of things to make you and themselves feel better in the moment, but I cannot really expect things from them, and I certainly cannot depend upon it. Being there for DW is just a much lower priority for everyone else. I understand that.

My DW family has been asking if I would relocate so I could be closer. My biggest fear would be if I do that, and they then disappoint me with their lack of involvement. I cannot bring myself to take that kind of risk.

blacksparky

https://alzconnected.org/discussion/comment/242231#Comment_242231

That’s exactly what I was saying. If I could go back in time, I wouldn’t have moved us back to be closer to her family. We built our retirement house with a couple of acres in the lakes of Minnesota. Now we are back in California living in a house with a 5000 square foot lot. 😩

Arrowhead

It is imperative that we have some time to ourselves once in a while. I didn't need it as much as some others, but I still needed it. Caregiving wears you out and you need a rest that you cannot find until you are removed from the situation. Find ways to keep it up.

Biggles

https://alzconnected.org/discussion/comment/242239#Comment_242239

Yep we moved out n the request of our daughter very caring and considerate but we hardly ever see her.

CindyBum

I am so dang happy for you. The biggest mistake I've made in these last six years is that I didn't get respite for myself soon enough. I went into a dark hole and finally dug myself out with the help of a lovely caregiver. If you can swing it to pay someone for hours like this during the week, please don't wait!

xoxo

jehjeh

II'm So happy to hear you got some time away, alone. Our caregiver is here two afternoons a week since late January and it took some time for DH to be comfortable with me leaving for more than quick trips to run errands. Yesterday, on my way home, I realized this was the first time in years that I could relax and truly enjoy a couple of hours away. I'm usually in such a rush that I can't relax and enjoy myself. I bought shoes, I tried on clothes, I browsed books... felt like I had my old life back for a couple of hours.

I hope you can have more days like this. It really is a necessity.