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Introduction and Helpful Advice Please!
I am a grand-daughter caring for my very dear grandparents. Their doctor has only diagnosed them with dementia and says that knowing what type they have won't really matter. My LOs are very independent people, always have been, and we want to maintain that independence to suit their needs/ability. I've been really reading and reading everything I can get my hands on to try care for them the best I possibly can. I have been a care-giver working in AL and a NH with about 4 years experience caring for seniors. I haven't experienced caring for my family though. This is really a whole new world for me and them. I'm facing many difficulties since there is so much I feel don't know. We have had to take over the medications and that was a very big ordeal for my LO since she has been doing them for so many years, she was very upset that they had been taken from her. The pills were left in the caddy or when she had set them up they wouldn't be the correct pill in the right spot or it would be a double dose. We have struggles since my grandma has always been the workhorse. She loves to be busy and cleaning. She would always be in the kitchen preparing food or feeding people. Which she still does now, just in a different capacity. She does her laundry although the dish cloths have been getting washed with the underwear. She wants to be the same very capable women she was 50 years ago. She has to be "in control" of every little aspect no matter what it is. Anything that goes against that becomes automatically defensive and angry or sad. I'm needing advice on how she can feel in control while still being able to help her care for herself. It's very complicated since they will try to "gang up" against me. My grandma can't drive anymore due to hazards to others but she still feels she is capable of driving. My car is parked in the driveway so she gets upset feeling like she doesn't get out but when offered to go out she doesn't want to go. My grandpa will then say that it's her turn to go out. I then have to think of a reason why she can't quite at that time. I think my grandpa has LBD and my grandma VD or MD. They are both mobile, one uses an assistive device and the other is too stubborn and refuses. My LO has dysphagia where he can't properly swallow without modified liquids and food. My other LO doesn't like that he has this ailment. He does really well with the prescribed diet. She will offer and try to get him to eat foods and liquids he can't have. She hates direction which is a challenge when she wants to make something for him and easily frustrated. My LO had a fall and I was able to transition to moving in to care for them. I have been trying to get them care for a while, but my family members haven't agreed and they are the POA's. Up until September they had been living on their own. I don't feel this encapsulates everything but please ask questions. Thank you so much, I look forward to hearing from you! <3
Hi Welcome. Just would like to stress these 2 points already posted:
Learning the validation method is essential. You will find ways to work around your grandmother so that she still feels herself (being useful) and you are getting her do things without both of you getting agitated. Try to find a routine to all the tasks you both can do.
Caring for 2 is monumental. You should have a discussion with whoever is in charge of the money, I feel you should be getting paid. At the very least, try and find out if they are looking into their long term care at a facility? You are doing a good thing but I would put an end date on your services--(ask yourself how long you really think you can do this?) aka get a Plan B sooner rather than later. Good luck to you.
I will have to go fill out the profile yet. I am the primary care-giver since my mom still has young children at home that need her and she works full-time for insurance purposes. I took matters into my own hands since things weren't being done. They weren't capable of living on their own anymore. My mother, I believe is still in denial, even though she has worked in a heavy cares AL and light cares AL. She wants to picture them as they have always been. She focuses on their good days where they are pretty capable. The plan B right now would be a NH. My LO has diabetes and dysphagia which most AL's won't accept. I have been without pay for quite a while since my mom has been working on getting VA benefits. I have been paid privately per week tho. I really have some wonderful friends. They will come visit and play games almost weekly so I do get to see them. My uncle will come over on Saturday evenings but he isn't there long enough for me to really go anywhere. I have been able to go on a 5-day trip and then I was spelled for an overnight with half a day. My LO had an extreme melt-down when I left and my uncle was staying with them. She doesn't understand her condition and continually thinks everything is the same as it's always been. My mom and my uncle are the POA's. They don't want to upset my LOs. One has STML but usually oriented. In regards to the their diagnosis, I was told by my mom, who was told by the nurse and doctor that it wouldn't make a difference for them. So I don't know why they said that. My mom says my LO wouldn't go through with the testing anyway. I also was told to turn to the Alzheimers' Association.
Hi D in law,
Thank you! The goal is to keep them out of a long term care facility as long as possible. I have a lot of thinking to do in regards to how long I will be able to. If the family will step in it will be fine but if they won't help I won't be able to continue doing it all on my own.
Hi Eric L,
You hit the nail on the head. They sound very very similar. She came in the kitchen as I was doing some spring cleaning and instantly upset since she thought I thought she was a horrible housekeeper. I said "Grandma, You take very good care of your house. I need to keep myself busy like you." She later made comments how you are so fast, she was going to come clean the plates and they were already done! The only thing is she is literally in everything. She is very hyperactive and won't sit still until she's going to sleep. Then she's out. I can't be in a room longer than 30 seconds without her checking and seeing what I am doing. She gets sad if the dishes are done without her. I am going to have to learn some of those tricks. I suggested my mom take her out for a day and I would be able to do the laundry and stuff while she's gone. Otherwise it would be near impossible to sneak anything past her.
I will say it, your family is taking advantage of you and will do nothing to make changes as long as you are the good granddaughter. You will be stuck doing this, as appears no one else wants anything to change. NOt sure how long you have been doing this, but this can last for a decade or more, and by then? Your job skills won't be competitive, your credit will be iffy (no big income), insurance (if still on parents, that will soon stop), you need to not think you are the only one to take care of TWO elderly people, that's impossible even in the best of circumstances. I think its great, not smart, but great you are doing this, but again, nothing will change if you keep it up...right now you are okay, but what if you get a significant other? want to have kids? date? exercise? What about saving for your own apartment? these are important things to worry about. You are far too young to be doing this with no control or power and everyone probablly so relieved you are there, they will do little toward a NH etc.
PS you should be making at least $ 25 an our minimum (that's usually for one person and doesn't include housework, etc) And if you are working all day, then for your waking hours you are caregiving, it would cost that much if not more, so please don't let them take advantage of your goodness, you have a life and a future,
PS so if they have a meltdown, so what they will move on and be okay, and this "don't want to upset LOd" is hogwash, your family doesn't want to upset themselves,
Thank you for the advice. I will have to try that. So far she hasn't wanted to go anywhere since we have been going out constantly so she doesn't feel the need as much to get out.
Thank you for your honest reply. I have been thinking more and more about it and the more I've been thinking about it the more I have come to the same conclusion. They don't want to upset themselves. I believe them to be in denial. I have some more thinking to do and action to follow.