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Does anyone have experience with parents with dementia? Could use some advice.

Posted: Mar 8, 2011

My mom has dementia. She knows all of her children and some of the grandchildren. She is going to a new nursing home today, which is going to really throw her off. Conversations are difficult. She talks a lot but much of it is delusional or just does not make sense. She cries easily. She gets angry and screams and yells easily. she often thinks some one is going to come "hurt her."

We have pages of instructions and advice on this and one of the biggest things is to keep things routine, which i understand but the drive to see her is 2 hours away so my visits are not routine, once a week or every other week. When my presence upsets her, I don't know what to do. I do not want to leave because the drive roundtrip is a total of 4 hours. I usually just leave the room for a little bit. When she tells me things that are not true and I disagree with her, like one of the grandchildren died, she gets upset and says I am keeping things from her or lying to her. How can I ease her tension and fears. I don't want to agree with her, especially about a grandchild dying, because later on that will confuse her more if she sees them.

I am just looking for tips in layman's terms on people who have dealt with this sort of thing, and what worked for them. Any bright ideas that the medical profession has not come up with?

;

my mom's dementia - AARPMom

[ In Reply To ..]
I don't know if your mom has Alzeimer or vascular or mixed dementia, so your mom's course may be different than my mom's. My mom has mixed, but primarily vascular She has strokes and then the dementia gets worse till she levels out again until the next stroke.

In the early stages, it was like what you described. My oldest sister's visits would upset her like yours, but she found comfort with my visits. The same worry about someone hurting her (usually she thought it was my sister). The same thinking someone was either alive or dead when it was the opposite. I finally figured out that my telling her the truth would make her cry that day, but she would forget about by the next day. The easy crying and getting angry, oy. It is really difficult on the parent to lose their ability to recall the words they want to use for communication, and it is difficult on the adult children to watch.

I don't have any bright ideas, just a lot of sympathy and understanding about what you are going through. Your mom will probably adjust within a few days to the new facility. I don't know if you first see her in her room or out, say in the lounge or cafeteria area. Maybe you can notice her response to you when she first sees you and see if there is a pattern. Does seeing her when she is in her room help her be more welcoming? or maybe out of her room? I always made a point to visit when I knew she would be in her room in the early days. Her things were around her to help orient her. Maybe bringing her some favorite foods or treats (I like to take ice cream or buttermilk) helps smooth the transition when you first arrive. I also like to take my little girl because she holds a special place in my mom's heart and she always smiles when my little one is there. I even took a basket of kittens for my mom to pet :) Funny, but she hated cats most of my life, but she melted with the little things crawling all over her. Touch is very important. If she will let you, take some lotion and rub her arms and feet with it. Don't worry too much about the conversations...just babble about anything.

I hate to say this, but visits actually got better after her last really big stroke about 1-1/2 years ago. She lost the majority of her ability to talk. She is very expressive with her eyes, though. She can't feed herself anymore, just doesn't understand that she has to work her arms and fingers. She so enjoys visits, though, knows who we are.

They say it is the deep memories they lose last. We put up old family pictures from her childhood and lots of other things on the walls.

I wish you and your family the best during these trying times.

That's it - I will take something. - Not sure what, but

[ In Reply To ..]
that is a great idea. She is bedridden, unless they sit her up in a chair for a while, and she has a PEG tube. She can eat, but will not. We have tried everything there. Sometimes she lets me brush her hair, but not always. The lotion is also a very good idea!!!! Animals are out of the question, but maybe I could take something else. Not sure what, but something she would like to hold and touch. Maybe even a new soft blanket. Thanks, AARP. At least I have a new directon to go in.

Dementia - Been There Done That

[ In Reply To ..]
We were in a position where we had my mother-in-law living with us for 5 years. She had severe dementia and would agitate easily.

The situations are different, as yours is in a home and the dynamics are different, but one thing I found that helped to remedy the agitation factor was I would give her a pile of silk flowers and a plastic vase, and let her do a flower arrangement. This, though, was something she enjoyed before her dementia. Not sure if your mother enjoyed that, but if you could find something she enjoyed doing before she got ill (some little craft, perhaps, or looking at photographs from "back when") it might help. My MIL would sit for HOURS re-doing the same flower arrangement. Of course, make sure all items are safe and she is monitored--they can do the darndest things--like a little kid!

Interestingly, people with dementia (even those easily agitated) are easily "amused" by tasks and can do them repetitively for long periods without even realizing the time is passing. We also used to give my MIL a big pile of towels to fold, and she would sit there folding them, making sure everything was "just so" on each towel. She was a "fuss budget" before she got ill, and remained so after when it came to that sort of thing.

Most of this is, of course, according to the person's likes and dislikes before they got ill. That's the part you have to play up. If she liked playing cards or board games, heck, deal out some cards or get out a game and make believe you're playing, clap, engage her, etc.

I would also recommend the book "The 36-Hour Day." It's mainly for primary caregivers, but it is an amazing book that very succinctly helps you "get into their head," so you can be understanding and find interesting ways to get out of sticky situations.

If you have a reasonably large city nearby, they have support groups, classes, and all sorts of things.

Good luck to you. This is very difficult, I know, but you'll get through this!

My dad, now my mom. - Shipwrecked

[ In Reply To ..]
When my dad was in the final stages of dementia, in assisted living, a dear friend in Australia sent me a little quilt they give their demented patients. It was maybe 3x3 feet, nothing fancy, and each square had something for them to do - one square had a flap with a button and button hole, one with a zipper, one with Velcro flap, one a little pocket with a kleenex, etc.

I would also buy him children's picture books with birds and animals (not stories).

He also loved it when I took my small dogs to visit - and the other patients loved to see them.

My mom now has dementia, and sadly my estranged brother who lives out of town removed her from assisted care, so my contact is extremely limited.

My grandmother had Alzheimer's and had to go - sm

[ In Reply To ..]
to a nursing home when my grandfather was no longer able to care for her adequately. They both enjoyed watching old movies and TV shows from the 1950s and 1960s, so my grandfather brought in a small TV with a VCR player and she would watch TV all day--The Three STooges, Little Rascals, etc. These kept her calm and she would just watch and laugh. My mom and her 2 sisters each had a day to go and my grandfather was with her almost 24/7. Having someone with her all the time seemed to be very comforting for her.

therapy - iceT

[ In Reply To ..]
I don't know if this has been suggested, but does the nursing home have a therapy dog program? If not, you might want to suggest it. You could call a hospital near to the nursing home to see if they have a therapy dog program and then go from there.

I have a therapy dog and we visit nursing homes and dementia units in my area, as well as a couple of other places. The residents in the unit adore him (it's mutual). Their faces light up when they see him and then they almost race down the hall to see who can get to him first!

I agree with the other posters that touch is very important, and many of the patients just want to feel the dog near them. Some residents don't do much talking at all but then begin to ramble on forever when they talk to my dog. Most have had dogs in their lifetime and many of them will tell me stories about a dog who captured their heart when they were a child.

I hope you and your family can find some answers in those who have been through what you are experiencing.

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