Dealing with Dementia

ravenray

So this weekend I am taking off to Oregon to see my grandma who has Dementia.  It has gotten much worse since my grandpa died last year and my dad says this might be the last summer she remember anything.  This makes me really sad.  I don't deal with death or illness very well.  I was wondering if anyone had any advice or thought to help me not freak out.  It has already made me on edge.  I love her a lot and it hurts me to see her this way.  I am afraid I will be a totally bytch to my BF on the way up there.  Any ideas to help me relax a little?

Peaseblossom55

Sorry I don't have any advice at all. I am in a similar situation my grandma who is only 72 has Alzheimer's, she has lived with my parents for the past few years and next week is being moved into an assisted living facility.  It is really hard for me to deal with the fact that soon she won't remember me and this is only going to get worse.  I don't deal well with illness or death either.  I totally sympathize with you though, it is very hard.  I do wish you the best and try to enjoy the time you have now while she does remember and make it a special weekend for you both.

lunarsongbird

Let me think about this one, but in the meantime...Here is a hug. I know I've said this before- but you might want to look into picking up some GABA (clicky) It's the "brain's natural calming agent." There is no reason for you to suffer through this without a little extra boost. You can find GABA at your local health food store.

lunarsongbird

Here is some really good information to start with:
http://wilmacliving.com/learning_alzheimerdementia.html#link9

It has some great advice on how to talk to someone who is a bit confused- and how to make a visit rewarding. Here are the tips I find to be especially helpful:

- Special memorabilia - photos, postcards, souvenirs, and other objects which have special meaning. Don't expect your grandma to take the lead and remember; come prepared with a set of memories you can relate to her.

- Read the newspaper, magazine stories, and poems aloud. Check with the programs and activities person for available literature.

- Give a manicure to your grandma. The programs and activities person may have supplies or bring your own. File, polish and then hand massage with some good smelling lotion.

- Take your grandma for a drive. You can ask the staff to help transfer your loved one into your car. Take a short drive and return. This is a great way to go out for a hamburger or an ice cream cone.

- Finally, a word about guilt. It gets in the way of a meaningful visit without adding anything positive to the relationship. There are no wrong choices in this situation; only choices that need to be made. If the visit is not a good one give yourself permission to end it and come back another time.

ravenray

Danser- I am so sorry you are dealing with this too!  Feel free to PM to talk any time. *Hug*

Lunar- thanks for the hug!  She isn't in a nursing home all the time yet.  She stays at home during the day but at night goes there.  But I can still use plenty of that advice.  Thank you so much!

Peaseblossom55

Lunar- Thank you for the good advice!

Raven- feel free to PM any time you need to talk or vent.  *hugs*

desertsun

In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/special-topic-wedding-boards_not-engaged-yet_dealing-dementia?plckFindPostKey=Cat:Special%20Topic%20Wedding%20BoardsForum:136Discussion:05afdf20-09d8-4d79-a401-c2471d871d25Post:c80098ee-bc8d-4e85-bcd3-84971c7e62d2">Re: Dealing with Dementia</a>:
[QUOTE]Here is some really good information to start with: <a rel="nofollow" href="http://wilmacliving.com/learning_alzheimerdementia.html#link9">http://wilmacliving.com/learning_alzheimerdementia.html#link9</a> It has some great advice on how to talk to someone who is a bit confused- and how to make a visit rewarding. Here are the tips I find to be especially helpful: - Special memorabilia - photos, postcards, souvenirs, and other objects which have special meaning. Don't expect your grandma to take the lead and remember; come prepared with a set of memories you can relate to her. - Read the newspaper, magazine stories, and poems aloud. Check with the programs and activities person for available literature. - Give a manicure to your grandma. The programs and activities person may have supplies or bring your own. File, polish and then hand massage with some good smelling lotion. - Take your grandma for a drive. You can ask the staff to help transfer your loved one into your car. Take a short drive and return. This is a great way to go out for a hamburger or an ice cream cone.<strong> - Finally, a word about guilt. It gets in the way of a meaningful visit without adding anything positive to the relationship. There are no wrong choices in this situation; only choices that need to be made. If the visit is not a good one give yourself permission to end it and come back another time.</strong>
Posted by lunarsongbird[/QUOTE]

<div>The last one there is particularly important -- it's okay to leave and come back another day if things aren't going so well. Also, you can't beat yourself up about things that you can't change. You just deal the best you can and try to let go of everything else.</div><div>
</div><div>I have grandparents in assisted living. It was a hard transition, and they don't have a lot of memorabilia or anything for me to bring and talk about. So when I visit, I like to bring them or take them out for something special to eat. They get great meals there, but I find it's easier on me to spend time if there is something else going on. So food or a book of short humurous stories are good.</div><div>
</div><div>I also have other family in the area, so I try to arrange my visits at the same time as someone else. It's just easier that way.</div><div>
</div><div>It's a really difficult situation. Just try to recognize that your BF is there to support you. Don't take your stress out on him by getting annoyed with him. Open up and have a real conversation about how you're feeling instead of trying to keep it together or putting a lot of pressure on yourself to feel a certain way. Your BF should be the one person you can be completely honest with. </div><div>
</div><div>*hugs*</div><div>
</div><div>ETA: Just to give you some context so you'll know where I'm coming from: My grandpa is the one with Alzheimers/dementia. My grandma had polio back in the 50s and has been in a wheelchair ever since. They are failing rapidly and it is so hard. It's even harder to watch my mom and her siblings struggling with decisions about their care, esp when the g-parents fight them on every.little.thing. There is only so much YOU can do, Raven. Don't feel bad about that. Try to just remember the good times, and know that your grandma will find comfort in you taking some time with her.</div><div>
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Wrkn925

I remember this from an e-mail I received a long time ago.--She may not remember you, but you remember her. 

Respect, patience and a little bit of thick skin will go a long way.

My grandfather started to lose it late in his life.  I remember calming him down when he was fussing about kids messing around outside his window. (He was actually looking at the TV.)  It was heartbreaking watching a man I have always looked at as being so strong, looking so weak.  He couldn't remember what year it was, where he was, but he could remember what crop grew best in 1948.

I mainly just did whatever it took to placate him.  Once, we were laying around in the hospital, and he was winding his hands like he was rolling fishing lure up.  I was trying to get him to sleep, so I asked him if I could do it for him. So, he 'handed' it to me.  My Mom looked at him and said, "Is she doing it right, Dad?"

His reply: "Nope, she does everything bassackwards.  She's left-handed."

There were many times like this.  Don't be heartbroken if she misses a few beats, but watch what you say, because she may pull one out of left field.

I would sing, read, bring pictures, and talk to him like he was the Papa I knew before he got sick.  I think he appreciated that.

As for BF, he was a effing rock.  The day Papa fussed about the kids in the TV, I came home, watched My Sister's Keeper, drank half a bottle of Southern Comfort and cried for a few hours solid.  And when I woke up the next day with my eyes swollen shut, he took care of me.  Just don't take it out on your BF.  Ask for support, but be nice to him if you want it.  Remember, he's there for you.

PM me if you need anything.  I watched my grandfather go downhill for a little over a year, and watched an uncle slowly lose his life to cancer this year.  It sucks, but you will survive this. 

lunarsongbird

Unfortunately (or fortunately- however you look at it), I've always been surrounded with illness and death- even as a little girl.

It's always been just another part of life for me. Just another transition.

Mark Twain once said, "The fear of death follows from the fear of life. A man who lives fully is prepared to diet at any time."

When I first moved back from Connecticut, I wanted to make a nice dinner for my grandmother, who has progressing Alzheimer's. We had hopes it would go well. However- it didn't. She didn't eat anything. She was confused. And she wanted to go home. I felt awful. But I had to realize that it wasn't my fault.

Now we take her just on short trips- she loves getting ice cream. Many people later in life can really only taste sweet things. Do you know your grandmothers favorite candy or sweet? I think she would like that.

My visits with my grandmother aren't for me- they are for her. She smiles brightly when she knows she remembers something- like me...she remembers that I'm someone she knows- even though she doesn't remember exactly who I am.

She gets confused now- and often tells us things that aren't true- but we just go with it. No need to confuse her further. Smile a lot. Laugh a lot. Smiling and laughing are universal signs of happiness- even with infants. Smile when you don't know what to say. Laugh when you are uncomfortable.

I tell her about my life. Even though she wont remember. I don't ask many questions- and if I need to- they are all yes and no questions.

If the visit isn't going well- it's not your fault. You can read out loud to her- or read to yourself if she just wants to be quiet. You can watch tv together. You can play her music.

Many people with Alzheimer's and dementia only remember things from their distant past. You may want to bring pictures of you and your family when you were younger- she might recognize that little girl more then the one she is with today. Visiting with my grandmother now is like opening a time capsule. She remembers stories now that she didn't remember or think about 7 years ago.

Again- Smile. Laugh. Go with the flow. Bring some sweets. Take pleasures in the simple things- when she remembers a certain flower or tells you about a past trip. Remember the good times- and hold her hand if she lets you. This trip is about her... and there might even be a possibility she wont even want to hang out that much- and that's okay too. Because it's about her.

It's okay to feel sad, scared, and nervous. It's okay to be anxious that the visit might not go as planned- try to not have any expectations. But however she acts- and however you feel- those are both okay. Cherish this time together.

::hugs, hugs, hugs::

ravenray

You guys are awesome!  Thanks for all the advice.  I am sorry you guys had to go through this too.

I was really excited when I saw who had responded desert and Wrk you guys are some of my favorite posters.

Luckily, my uncle lives just across the border, so we are going to stay with him.  That way we can break it up a little.  Go to the beach, hang out with my uncle and aunt, do whatever. We also might go up and see my other grandparents.  I don't know yet it is a long drive.  (8 hours to get there and another 5 to see my other grandparents)

I just finished up a ceramic class in school so I think I will bring her something I made; I use to do that all the time as a kid.  Wrk I liked the idea of singing.  She is very talented musically (plays flute, piano, sings, was in an orchestra) and I think she would like that.

I know the BF will be awesome.  He was when we went up there last time for my grandfather’s funeral even though I was a total witch the whole way up.  Thanks for reminding me to just tell him.  Sometimes I am not very good at expressing my emotions in words which is frustrating. I tend to bottle things up that hurt me.  It hasn't helped that I have been rather lonely the last couple of days.

Thank you girls for all the words of encouragement and advice!  It really means a lot to me.  Like I said I am not very good at expressing my emotions, but this means a lot.  Thank you for sharing.

peekaboo2011

Firstly, hugs.

Second, this isn't your fault.  You shouldn't feel guilty about anything.  Desert had some good points in that section.

And the one thing that gets me through it every time is trying to remember the good parts.

My grandma started to lose it when I was 8 or 9, right after grandpa died.  He died of emphysema, and she's basically a chain smoker.  I get angrier with her about the whole thing the more I understand.  It's the reason I'll never smoke, and smoking is a deal breaker in a relationship.  Side rant over.  In any case, she lives with my cousin (and her two kids, who grandma basically has raised on her own) and her son (who is 40 years old and most likely on drugs) and neither have helped her at all as she's gotten older.

When I started high school, I was over there, and she couldn't understand why I wanted to talk to her about how excited I was about the book I had for summer reading for AP European History.  She wanted to tell me how awesome it was that cousin's oldest kid could read.  And it got worse.

She once called me SCREAMING about how awful FI was because he answered my phone and wouldn't let me talk to her.  She didn't get it when I tried to explain that we hadn't spoken in 3 months.

When I called to tell her about grad school, she asked how the 8th grade was going.  And when I called to tell her about the engagement, she asked how my future wife was, because she was POSITIVE I was my brother.

You have to remember what it was like before all of this happened.  You havie to hold on to those moments.

My boss at my last job had a mother with bad dementia.  It was really hard on her, but she had a good sense of humor about a lot of things.  Her mom was beyond crazy, and we had many a good lunch giggling over her antics - she would get upset that she had lost something and they'd find it in odd places, she'd get upset about people looking at her cross-eyed...it was a riot at times.

And, we're all here for you when it gets really hard.  Feel free to PM me if you ever want to talk.  Hugs!

lunarsongbird

Also- think about what you need/want from your boyfriend. Do you need him to be quiet and hold you? Boys often like to talk when things are broken- they want to fix things. He's going to feel awful too...He can't fix this. He can't fix your anxiety and pain.

I've been through this situation too many times, unfortunately. And you're right- it creates tension- and sometimes fights. Sometimes it's easier to direct anger at your loved ones then deal with the overwhelming sadness you are feeling.

Boyfriends panic when my mother gets taken away in an ambulance- or my dad gets admitted into the ICU.

Boys definitely aren't mind readers and he's going to feel lost in this situation.

You can share with him exactly what you're feeling- and what you need him to do. Even if it's silly like- "I need you to buy me flowers and a stuffed turtle." You can ask him to make dinner, take you to a movie, or read to you.

This help- a ton- trust me. Just let him know what you need during this time. ::nods::

And we'll be here for you too!

ravenray

Aw you guys made me tear up a little.
Peeks- thanks for the hug.  I don't think I really feel guilty.  I know this isn't my fault.  I can't do anything about it, it just hurts.  When I talked to her on the phone last week she asked me if I could drive.  I have been driving for four years (granted that isn't that long in the grand scheme of things but still that rocked me a bit) Thank you for the support. I am sorry about your own struggles
Lunar- that is a really good idea.  I need to talk to him about it.  It is kind of hard to right now because we both have finals and are stressing about that but once finals are over I will let him know.  Part of the problem is I am not sure myself.  Being held sounds great, being treated sounds great (but I really can't ask him to do anything expensive because he is going to fund this trip for us).  Thanks guys for being here for me.  It means a lot

mrosenb

My grandfather has Alzheimer's disease and it is heartbreaking to watch him deteriorate. Currently, he repeats questions over and over again. I just came from my grandparent's house and his question today was " Where do you live?". I have lived across from my grandparents for three years (he owns the house I live in). I reply right across the yard and he responds "Oh, really?" and proceeds to tell me a story about the house, etc. Ten minutes later he asks the same question, but this time I change the response. With each response I give, he gives a new story. It helps in two ways - I do not feel frustrated by his repetitive questions and I learn something new about him (whether it is accurate or not). It truly makes our visits and time spent together easier and more meaningful.

I do not have expectations for him or our visits. He guides the visits with his "question" of the day or the topic he is interested in. He also has good days and bad days. On good days, he remembers a lot and on bad days he remembers very little. If I am interacting with him on bad days, I do not question his thoughts or challenge his accuracy. I simply listen and respond.

I also feel it is okay to cry. Although I never cry in front of him. The grandfather I remember is not the grandfather I have today, but he loves me just the same.

You will find your way to interact and feel comfortable. It is a learning process as each individual is affected differently by the disease. I will keep you in my thoughts.

Peaseblossom55

Thank you Raven and everyone for sharing their stories, it helps makes things a little easier, and you've given some good advice too.

loves2shop4shoes

I know how tough this is.  My grandpa had Alzheimer's before he passed away.

Try to make light of the situation.  My grandpa had a sort of "I'm old!  I'm not supposed to remember!" attitude and it really helped make things easier.

It will be tough, but you still have your grandma with you.  Enjoy your time with her.  Never fail to find the humor in things.  Also, play lots of board games and listen to music with her.  Music is the last part of the memory to go...

DanieKA

I don't have any experience but I just wanted to send hugs. Maybe take some pictures of you two together so you have those memories or bring pictures of you together from when you were younger. I'm so sorry you have to go through this, but try and enjoy any time you have with her! 

ravenray

Thanks guys for being awesome and giving me such good advice!  I will take it all to heart.    You guys made me feel better.

LizzyTish88

In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/special-topic-wedding-boards_not-engaged-yet_dealing-dementia?plckFindPostKey=Cat:Special Topic Wedding BoardsForum:136Discussion:05afdf20-09d8-4d79-a401-c2471d871d25Post:4dbae726-2417-4957-bf6b-617495e315e1">Re: Dealing with Dementia</a>:
[QUOTE]I know how tough this is.  My grandpa had Alzheimer's before he passed away. Try to make light of the situation.  My grandpa had a sort of "I'm old!  I'm not supposed to remember!" attitude and it really helped make things easier. It will be tough, but you still have your grandma with you.  <strong>Enjoy your time with her</strong>.  Never fail to find the humor in things.  Also, play lots of board games and listen to music with her.  Music is the last part of the memory to go...
Posted by loves2shop4shoes[/QUOTE]

I can't write too much here without crying. My Nana had dementia and we would just try to make light of the situation. It was the only way we could really deal with it. If she would call me by the wrong name or something I would say "No Nana, I'm C, the better looking one!" I'm a true believer in laughter as the best medicine.

I can't stress enough to try to make the most of your time together, however that may be. Time is the one thing in this world you can never get back so try to make the very most out of it.

This weekend is going to be very difficult for me. This will be my first graduation (other than high school, and me AS) that I won't be able to take my diploma and cap and gown over to my grandparents house to get a picture with them. I lost them both in the past year, and miss them so much. And now I am crying..


When you see your grandma, give her a hug for me.

lunarsongbird

::hugs to you::
Very bittersweet! But boy are your grandparents proud of you! And they have the best seat in the house!! Heaven is throwing quite the party for you this weekend!

Hazel_B

My Grandma had Alzheimers before she passed away. I was under 15 when all of this happened. My mom didn't force my sister or I to go see her because she didn't want our memories of her to solely be about Alzheimers, particularly my sister who was under 10. However, my mom continued to go on a regular basis.

I know it is very difficult to go through and I don't really know how to suggest making things better. I know for my Grandma her mind settled on an era when she was much younger, in her 20s. As hard as it is, play along with where their mind is and work with their limitations. In the case of my Grandma, we only talked about things from her 20s (which also meant she didn't know her children or grandchildren) but it made her more lucid and less agitated. It was still her personality, just at a much younger age.

Think of things that your grandma has always liked to do and where her current limitations are. For example, if she was always a baker then bake something with her. Just try your best to make quality time with her.

ravenray

When you see your grandma, give her a hug for me.
Oh CD!!!  *HUGS*  I will.  Just remember that they are watching you from heaven.  They love you and are so proud of you!  I am sorry for your loss.
Hazel- I am sorry for your loss too.  Thank you for the advice.