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Introduction and Helpful Advice Please!
Posted: Monday, April 29, 2019 2:07 AM
Joined: 4/29/2019
Posts: 27

Hi Everyone,

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

Posted: Monday, April 29, 2019 7:00 AM
Joined: 3/6/2017
Posts: 1642

Welcome PreciousMoments. I am sorry you have a need to be here but happy you found us.

You didn't flesh out your profile which would be useful for anyone responding to such questions, so if I presume please forgive me. 

Some random thoughts-

Why are you the primary caregiver? Where are the couple's adult children and why have they not taken on this role? Is there a Plan B in place ready to be implemented should you be unable to continue care?

The cost to a younger person- in terms of income, health insurance benefits and contributions to their own retirement- in stepping out of the workplace is considerable. Are you paid to do this work?

The position of 24/7 caregiver is also a very isolating one and can interfere with maintaining friendships and creating a family. Does any of this apply to you?

Respite is important. Do you have someone covering for you several times a week so you can get a break and see friends?

Who has the legal rights to make decisions on behalf of the grandparents?  So basically, you are providing care while family members preserve assets rather than use them to care for their parents? I personally wouldn't enable this. 

Why have they not had complete dementia workups? I think a proper and accurate diagnosis is important in most instances. The medications that are appropriate for some kinds of dementia are dangerous in others. And some conditions that mimic dementia symptoms have other causes that can be reversed with treatment. One of my dad's dementias was the result of a vitamin deficiency; he improved for a time when he was properly supplemented.

For approaches to your grandmother, any of the Naomi Feil books about Validation would be a good resource. 

D in law
Posted: Monday, April 29, 2019 11:14 AM
Joined: 4/24/2017
Posts: 564

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.

Eric L
Posted: Monday, April 29, 2019 11:56 AM
Joined: 12/5/2014
Posts: 1078

Your grandmother sounds very similar to how my MIL was in the earlier stages. She was essentially unable to care for herself, but the dementia made her believe that she was taking care of herself as she always had.

One morning, I was in the middle of mopping the kitchen floor because it was a filthy mess (and that's an understatement) and she got very angry with me and told me that she had mopped it yesterday. You could tell that just by looking at the floor that this wasn't accurate, but her perception and judgement had deteriorated more than I think we had realized at the time. Can you imagine someone getting angry at you because you are cleaning? We ended up having to find a workaround, because trying to reason with her just didn't work anymore. At first, I usually got up a little early and did that kind of stuff before she got out of bed. One day, one of the kids spilled apple juice on the floor and she saw me clean it up and got angry and I told her "that one of of kids spilled juice and I need to clean it up right now" and she accepted the answer. After that, anytime she "caught" me mopping I just used the juice excuse and there were no arguments from her.

We ended up doing similar types of things for laundry. We'd put the clothes in the washer/dryer when she wasn't paying attention and then when they were done, get them out and act like she had done it. We had started to notice that she wasn't putting soap in and usually complained that the dryer wasn't working (because she didn't turn it on right).

She was also very fixated on the idea that she needed to clean up the kitchen after dinner. It took forever, and we usually had to go in behind her and rewash stuff because she wasn't using soap. She'd use a dirty, nasty sponge to wipe down the kitchen rather than wipes or spray. I'd have to go behind her and essentially clean the kitchen again after she was done. With needing to pack lunches for the kids and get ready for the next day, at a certain point, it became counter productive for us to let her "help". What I ended doing in that situation is I would tell her "Oh, I need to pack the kids lunches for school. Why don't you go sit and relax a bit and I'll get you when I am done". Usually, by the time she remembered, I was done with the lunches, dishes, and wiping down the kitchen. More often than not, if she walked into the kitchen and saw it clean, she thought she had already cleaned it.

I have many similar stories. Just learning little tricks (sometimes called fiblets) and workarounds to get stuff done can be really helpful and make your day a little easier.

Posted: Monday, April 29, 2019 11:50 PM
Joined: 4/29/2019
Posts: 27

Hi Harshedbuzz,

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. 

Posted: Monday, April 29, 2019 11:55 PM
Joined: 4/29/2019
Posts: 27

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.

Posted: Tuesday, April 30, 2019 12:07 AM
Joined: 4/29/2019
Posts: 27

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.

Thank you! 

Posted: Tuesday, April 30, 2019 9:21 AM
Joined: 3/28/2019
Posts: 13

My parents have both had to stop driving.  With Dad, the cardiologist said he shouldn't drive, so Dad got it in his head that he has a bad heart that could go at any time and he could wreck.  When he has mentioned driving, we remind him that the doctor said no.  However, I have had to tell him that he once was a good driver, but he no longer is.  With Mom, it was the eye doctor.  I went in to the visit with her and asked the doctor in her presence about her driving.  She has macular degeneration.  He said she should not drive.  He said her inability to see small details could cause an accident.  Since I was there, she couldn't say otherwise.  When she said she thought she could drive herself to church, I reminded her that she might not see someone and hit them.  What really got her was my telling her that she might not see a cat and run over it.  She loves cats, so that got her to stop driving.
Posted: Tuesday, April 30, 2019 4:07 PM
Joined: 7/12/2017
Posts: 1302

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,

Posted: Tuesday, April 30, 2019 9:34 PM
Joined: 4/29/2019
Posts: 27

Hi Librarycat,

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.

Posted: Tuesday, April 30, 2019 9:39 PM
Joined: 4/29/2019
Posts: 27

Hi GubbleBumm,

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.

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