We lost our beloved dad to pancreatic cancer October 17. My dad did absolutely everything for my mum so when he lost his battle she was completely & utterly lost. Mum lost a huge amount of weight caring for my dad & continued to lose even more afterwards. We put her confusion & memory problems down to the shock & grief of losing her soul mate. Eventually we had to accept that her behaviour was more than the grief so we took her to the doctors. After she did some basic tests the doctor told us that she had to refer Mum to the Memory department at the hospital. After a brain scan, some memory tests & then a further in depth memory tests the specialist diagnosed mum with Altzheimers & Vascular dementia. This was back in December 19. Unfortunately due to Covid we have not been able to have an assessment done at home & feel like we have been totally left. I have phoned social services & the mental health clinic that has taken over her care many many time’s but we sadly just don’t seem to get any calls back. Mum has gradually declined in her memory & over the last few weeks she has started to really deteriorate & now sleeps most of the day, not interested in eating, hallucinates which has really progressed this week & has been saying something in particular which is “I can’t get this fog out of my head”
She says she doesn’t have the confidence to do anything at all for herself & can’t be bothered to do basic tasks. Her hygiene is become a bit of a nightmare as she never seems to want to shower & she wears very dirty & stained clothes day after day. I do her washing but she does get cross when I ask if she has anything to wash. My husband, myself & my brother share all of her care. Luckily we hired a cleaner for her as she never does or wants to do any cleaning. We have approached the subject of getting a carer/s in for a few hours a day to start with as soon I know she will become incontinent as she is not always getting to the toilet in time. We knew deep down she had this for a very long time before her diagnosis so we don’t really know at what stage of the conditions she is at as we haven’t had an Assesment yet.
Being a carer is mentally very hard especially when for instance my mum keeps saying the same words & sentences over & over again & just wont believe what you are telling her. She has become very snappy, stubborn & has completely changed personality which is so upsetting to see
We really don’t know how much longer we have her like this before she disappears completely as little by little we are losing our mum which is heartbreaking
I want to wish the very best of luck to everyone who has become a carer if this dreadful condition

Thanks for sharing and the work you're doing to help others who find themselves thrust into the caregiver role. It's nice you included your ex's father in your life - yours was a special relationship and a great gift to your daughter, too.

My biggest concern/challenge as caregiver to my husband is the fact that I have chronic health issues, too. The pandemic makes him at high risk of dying should he get it, so bringing in outside help doesn't seem wise, much as I would like it. Most days I just keep my fingers crossed that my issues won't interfere too much with his care - so far, so good!

I agree with most of the article. After 47 years of caring for a bipolar parent with abusive and manipulative behavior, I have taken permanent respite from the caregiver role. The family members who barely lifted a finger to help can step in and now have all my tools and contacts available to them. Sometimes you have to do what’s right for yourself and see your role for what it really is to emancipate yourself from family dysfunction. That’s the first step I suggest in self care in the caregiving role.

Being “empowered” is difficult when you tried to get the loved one to put things in place to prepare for their eventual decline, they refused to do so, and then you are stuck dealing with the aftermath with no money (unless you want to mortgage your OWN future), a healthcare/elder care system that is absolute GARBAGE & full of lazy, incompetent, abusive, dismissive people, and sheer exhaustion & overwhelm.

As another commenter said above: 24/7 caregiving isn’t a matter of being empowered; it is a miserable slog, day in and day out, carrying a burden that NO ONE ELSE WANTS TO HELP WITH unless they get paid a lot of money you don’t have.

I’m personally sick of constantly being made to feel like I could’ve done something to make this bearable, when the system is set up to fail. I’ve called all the agencies, paid all the geriatric “experts”, hired the thieving “caregivers”, paid the elder law attorneys...and you know who is still dragging themselves out of bed with an aching back & a sense of dread? The full time, 24/7, no days off, dedicated loved one who is left to do everything alone. If one more person gives me the “hang in there & make sure to take time for yourself” speech, I’m going to strangle them. I can’t magically make more hours in the day.

I found myself nodding a lot, (not nodding off, but nodding a lot, in agreement), with points raised in this article. I, too, was a caregiver, ( for my mom, with Alzheimer's), for 5 yrs. and 3 months, until she passed away. It is absolutely true, that the role of caregiver can come at you with no prior warning, (for patient or caregiver), and my husband and I adjusted out lives accordingly. There's so much mis-information out there about Alzheimer's. Many people (including myself, until I dealt with it), think that Alzheimer's is just a memory issue, but there is so much more than that. There's cognitive decline and inconsistency, agitation (for everyone), etc. This was certainly a learning experience, again, for everyone. Doctors had to adjust her medications. My mom and I had some funny moments though. I even wrote a book highlighting our experiences called, "My Mother Has Alzheimer's and My Dog has Tapeworms: A Caregiver's Tale." I had to find the humor in our journey, which helped everyone.

Hi have taken on the role of care giver for my mother in law with dementia thinking it would be easy but I'm just realizing it a day to day 24/7 plan that god has put me in she has been with us for 2 years moved her into our home the last three months have been a whirl wind of three hospital stays bowel ubstuction infection and dehydration not wanting to eat and so much more she lost her husband of 66 years not remembering his passing day by day she asked for him wanting to go back home wanting to die it taking a tole on me and our family my husband is the youngest of six and we don't get much help we are planning to go on vacation not sure how we should go about telling her. Any suggestions? I'm feeling burned out I'm stuck in my house just now getting someone to help once a week Im feeling stressed depressed and not sleeping I love her I guess I I need someone to just tell me what to do next any suggestions

Wonderful story. I would like to share this article. This is so inspiring! :)

Try writing about fearlessness and empowerment after you have done real 24/7 caregiving. I went back and read the part where you wrote, "I visited him everyday".

all the more reason I will refuse medical care after 85. Open heart surgery at 83? Really? Who thought THAT was a good idea?

A very good artical. There are so many dimensions to caregiving that can give you a wake up call you never expected. In the 4.5 years I took care of my wife I quickly learned the many hats you wearing take care of someone. I reget nothing that I did and I gave my wife the best care possible until she passed away. Now it time for me to get back on track living again. I miss her so much....

THis was exactly what happened in our family! Going from the occasional helper to being forced into a 24/7 caregiver to a helpless aging and I'll mother. Wow, it's like I wrote I myself!

Thanks so much to the person who wrote in about being "thrust into caregiving." That is my precise situation with my mother who has late stage dementia, and she is now living with me. Even though some of the details are different in each of our cases, so much of the bottom line rings true, regarding what all of this REALLY entails, day to day, 24/7. My mother moved in with me (single older myself female) only about a month ago, so needless to say there were a lot of adjustments necessary, on so many levels & of course I can relate to all of the feelings you mentioned. But thank you so much for your attitude/idea of Empowered Caregiver. It's so easy to get swallowed up & frustrated in this system that is so flawed in so many ways. And also, thanks again to AgingCare.com for providing this incredible website! I don't know what I would have done in these last few weeks of "my sudden new role" - with no prior experience or training. This whole thing has become a real eye-opener for me, as I don't know anyone else personally who is in my same situation. And look at how many thousands of us are all trying to accomplish what sometimes seems like the impossible! There is strength in numbers...maybe some things can be made better for the future if we persevere.