I have been helping my husband for almost 20 years with chronic illnesses probably caused by his lifestyle choices. He is now under hospice care at home with CHF and pressure ulcers that do not heal due to his peripheral neuropathy caused by rheumatoid arthritis. I do have support from family and friends but as you guys probably know they can only offer so much understanding as they do not "walk in our shoes" - any advice on how to handle this "limbo" stage of our lives would be appreciated - I see lot of posts from sons and daughters who are caregivers for their parents but I guess this is a unique situation or maybe not?
What I can tell you is that I doubt that I could do all that I did now that I am in my 70's. (and it pains me to say that and this is probably the 2nd time I have admitted that)
I can tell you what you should do.
Find yourself.
You are not the same person you were 20 years ago, 10 years ago or even a year ago.
Find a way for you to channel what you have learned, a passion and share that.
If you don't have caregivers that come in and give you a break it is high time that you have help. Even 2 days a week for 6 or so hours will be a mini vacation for you, and maybe him as well. Hospice can help with some of that. A Medicare requirement is that Hospice has Volunteers. A Volunteer can come sit with your husband and you can get out. Typically 1 time a week and the maximum time would be about 4 hours. They can do no "hands on care" and they can not physically feed a person or give meds. Most Hospice will try to "fit" a Volunteer with a patient so if your husband loves classical music they would find a Volunteer that also likes classical music, if he likes sports they will find a Volunteer that likes sports.
Find you again and become engaged with something. Honestly being involved with something when my Husband was on Hospice truly helped me when he died. Volunteering gave me a reason to get up, take a shower, get dressed and go out the door otherwise the time right after his death would have been a LOT more difficult. I still volunteer and it does keep me busy.
Your situation is not unique what is unique is it is you. Your reactions, mental ability to deal is yours alone. I have figured out that "we" are a lot stronger than we think we are. You have to direct the strength so that is working for you not against you. You get much further, faster swimming with the current than against it. That is not giving up or giving in it is finding the right path.
One thing that may be helpful for you is to fill out your profile here. That will help you get better answers. Plus, it will help you organize your thoughts, feelings and story. Finding the right words describing your situation is freeing in itself.
I think we as children have much more to complain about than the caregivers taking care of there spouses.
I take care of my mom, but much of the reason I'm here is because my husband is 12 years older than me, so I'm trying to educate myself as much as I can.
I'm very sorry for everything you are going through, it has to be very hard doing this day in day out.
You are a new poster so you may not have found how much information there is on the site. If you click on ‘caregiving topics’ under ‘resources’ at the top of the screen, you will get an alphabet list to click on. That will give you articles and old discussions about a very wide range of issues. Alternatively you can click on the magnifying glass at the top right of the screen, enter any term that seems relevant, and find every old thread that contains those words. That may give you ideas, of even just a way to be a bit clearer about what advice might be helpful. Best wishes, Margaret