Tuesday, June 3, 2014

Update on grandma

My grandma and grandpa came back from their winter down South the day before we left for our vacation.  I wanted to swing by to see them for a few minutes before we headed to bed for the night but their flight ended up being delayed over four hours so we couldn't see them.  To welcome them home, I left a card and this...


My grandpa is a pie fiend and given the appetite grandma's pills give her, she's a close second these days.  I bought them some sugar free ice cream for the freezer and left a welcome home card.

I spoke with him a few weeks prior and he told all of us at various points to be prepared because she was worse.  Well, we knew she would be but he also can blow things out of proportion sometimes and when you're the one dealing with the day to day stuff, I'm sure it only seems magnified.  So we just held our breath and waited to see what "worse" entailed.

He had some family issues on his side to tend to as well as a reunion and there was just no way Grandma would've been able to go to that for many reasons so my mom and aunt went over to sit with her all day.  Mom invited us to come over and say hi at some point.  I think it was more to break up the monotony and give them a break from trying to figure out what to say or what they could actually do with her.  In between runs to a store, we stopped over with desserts from a new cakery.  (What can I say, I show my love through food and it brings her so much pleasure, I can't not do it.)

She was immediately different to me.  Before, there was at least a chance that she might remember me in a moment but this time, I was finally a stranger.  Before when they said my name, she would see my face and be somewhat cognizant of who I was after a minute or two.  Now...it was explained who I was and it didn't click anymore.  In that moment, I knew I would never again hear her say "my baby, my first grandbaby."  How I would give anything to hear her say that and know who she's referring to.  She doesn't know her daughters anymore.  She knows she trusts them but she doesn't know them anymore.  She asked for grandpa all day, she didn't know that her house was her home.  She asked when they were going home and my aunt said she was home and she said "this is home?  Okay."  I had to bite the inside of my lip hard to stop from welling up.

We did get one good moment.  She was sitting on the couch kind of spaced out and tired from her meds, as seems to the the usual now so you never know if she's hearing you as you talk to people in the room or if she's blocking everyone out.  We were talking about a place we went for lunch in San Francisco and how bad it was and it cost $75 for lunch.  When I said that, she said "WHAT!?"  We all started laughing and I said "can you believe they wanted that much for lunch?"  She shook her head no and said "$75."  We live for those moments.  It just really sucks that we only get her for five seconds at a time, if we're lucky.  I guess later when he called to say he was almost home and they got off the phone with him, they told her he would be home soon.  She lit up and started to poof her hair and straighten her clothes to look her best for him.  I am so thankful she still knows that love for him, enough to know she wants to look her best for her sweetie.

My mom and aunt do scrapbooking and they know despite the book we all have saying you need to stimulate her mind that my grandpa doesn't, they did.  They brought some different shapes in different colors and had her sort them.  She did good and it was good for her to get some kind of mental activity because she literally sits in the house all day and night except when they're going out to a restaurant.  She gets no physical exercise, not even a walk around the block.  She's much slower now so a walk may not be the fastest but she needs to get up and around.  I feel like she's a neglected plant, the kind that doesn't get enough water and she's withering away.  She also is to the point where she feels like she has to go to the bathroom all the time and she can no longer go alone.  I think in the 90 minutes we were there, she went 6-8 times.  It's like she goes so that she doesn't have an accident.  The problem with this is that my grandpa just had scans done on his knees and he's bone on bone so if she's doing that that many times in 90 minutes, imagine him having to get up with her day after day on bad knees.  If he has surgery, it's minimum three months of rehab and he doesn't want to do that.  Of course, I'm thinking it might be time to look into assisted living where they can both live because they can afford it but he refuses.  This is going to end up being a battle of wills and people trying to make something work in a declining situation.  I've made my opinion known on the subject from the start but I'm not going to keep bringing it up because everyone else thinks they have the answers.  So I get to sit back and watch various situations come up and wonder how the hell this is all going to play out.

When we left, I barely made it to the car before crying.  It is so hard for me every time.  I feel like I can't talk to her anymore because when you look at her, she might look away, look through you or not understand what you're saying.  It's so hard when you're used to having a conversation with someone to feeling like you just don't know what to say anymore because she doesn't understand a lot of the words you say.  Conversations are one or two word responses now and she can barely keep her eyes open anymore so you wonder if trying to talk to her actually tires her out.  I can't seem to see her without feeling like I'm going to break down every single time and when I'm seconds out of her sight, I do.  I wish I could be stronger, I wish I could do what needs to be done but I guess I'm just weak and the one person who can make it all better doesn't know me anymore.

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27 comments:

  1. This is one of the hardest things to watch unfold and be powerless against. It's like, yes she is still with us and walking around and some might say that is a blessing but this is a fate worse than death. Yes there are those blessing moments and I cherish those but I hate seeing her like this. Actually more importantly I hate feeling like I have to treat her the way I do. I treat her the way I would treat a child that I've just met and I hate that but I don't want to confuse or upset her so I don't feel comfortable just treating her like her old self and that sucks.

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    1. It truly is a fate far worse than death and only people who have watched someone they love so dearly decline like that can understand the sentiment behind that. I remember a friend who watched her mom go through that told me about all of the things to expect and I felt so horrible that she had to see those things. I almost use it as a yardstick now for the amount of time we have left with her and it's not good. You know your grandparents won't always be there but this is just the worst possible way to go out and a way that is so undignified for a proud woman like her. We MUST get more research dollars going toward this!!!

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  2. I have no words - it just sucks. Sorry you have to go through this.

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  3. I have a great uncle suffering from dementia/Alzheimer's and it sounds as though he and your grandma are in about the same place. My uncle was never married, never had children and has always been very handsome. He took good care of himself, but that's fading away. He now lives in an assisted living facility that he doesn't recognize as home. But he also doesn't remember the last place he lived either, even though he was there for 11 years. My Mom is responsible for his care and she still takes him to doctors appointments, haircuts and nail trims but that is becoming difficult. Last week Mom was upset to realize that he no longer washes his hands and she had to make him wash them before she took him out then had to tell him to wash them after going to the bathroom. But then he was at the doctor's office and danced with the nurses as he went to get his blood checked, and she can see he is still in there somewhere. We have to laugh or else we'd cry about the things he does.

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    1. So sorry to hear your family is dealing with the same thing. In the beginning, I thought moving to assisted living while she still had the chance to adjust to it being "home" would be best. Many materials suggest this. Now, seeing that she doesn't recognize the place she's called home for 19 years is like 'well, that shoots that out of the water.' But now assisted living would be beneficial to both of them because his own health isn't the best and this is wearing him down. He's very stubborn and will cut off his nose to spite his face and I just see nothing but disaster not too far down the road with that kind of attitude. You do have to laugh at the things they say or do but man, the second I'm out of sight, the tears just flow whether I want them to or not. :-\

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  4. Sending you a giant, bone grinding virtual hug because there are just no words.

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    1. Ooh, I think I popped a rib but those kinda hugs are the best! :-)

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  5. You are not weak, you are human and that is the normal reaction to losing someone you love. Losing them gradually and then having them physically here when they are really already gone is even harder. Hang tight to those great memories with her and cling to the little nuggets you can still get--$75!!!???--funny! That would have slipped by most people as a "clingable" moment but you are great at being observant and noticing life's nuggets when they happen. So sorry you are dealing with this most difficult thing, but you are handling it with grace.

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    1. Thanks girl. I try to be. I feel like I'm so desperately looking for any trace of the personality of the woman I've known and loved all my life that I cling fiercely when she pops up, even for a moment. I really miss her mispronouncing certain words and would give anything to hear that again. Fettucini was feggucini. Fuschia was fahroosha. Ridiculous was reedickless...our favorite.

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    2. That is so funny!!! We had the same thing about both of my grandmas--skillet was skiwwet, and right at the moment, I'm drawing a blank on the rest, but I know what you mean. Hang in there!

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  6. You are not weak, you are human. You miss your Grandma, the way she used to be. I'm so sorry you have to go through this, I'm sending huge hugs to you! My father-in-law passed away 20 years ago at 63 of Alzheimer's, so I understand completely how you feel. My husband was 30 when his Dad passed, and he feels so cheated, because his Dad developed it around age 50, so really he feels like his Dad left him when he was 17. I truly feel that Alzheimers/dementia is harder on the families, they have to watch the progression of this awful disease. My father-in-law asked every day if he could "go home now". We believe he was thinking of the house where he grew up, that's where he wanted to go. When you're feeling really sad, take a few minutes to remember the good memories you have of your Grandma, have a smile and a laugh. As a family, we found that sometimes reminiscing about things he said or did, quirky habits he had, before this disease started, got us through the moments when he didn't know any of us. Again, big hugs to you!

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    1. That is awful. It's hard enough dealing with it at my age but I can't imagine losing your parent to it so young. I miss her so much and I just hate that we're at the stage where I'm a complete stranger despite her having 5 pictures of me on her fridge. Sigh. Thanks for the hugs and pass one along to your hubby as well. It's a crappy club to belong to.

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  7. Haha so funny that you mention the $75 thing. My grandmother also had dementia before her death, and hadn't shopped for herself probably in 15 years, from the beginning of her decline. Getting outraged over what we had paid for things was always what most consistently brought her out of her "fog." For example: "You paid WHAT for a towel?!" I know your post is a sad one, but thank you nonetheless for bringing back fond memories of the good times. So unfair when a great mind doesn't shine as brightly as it once did.

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    1. Isn't it funny the things that will pop out at the oddest times! I'm thankful for those moments. I remember early on when she was diagnosed, she let some stuff slip about how she really felt some people and we were like "go Grandma!" LOL

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  8. What a tough situation. I pray I don't live long enough that I lose my memory. Your Grandfather definitely needs help--Daily! Someone needs to take Grandma out for a bit or sit with her so he can get out for a bit. Maybe that is already being done. I had to step up and be strong when my dad was in hospice and I was his chief caregiver. Hardest job I ever had. And now I'm going through it with my sweet Du. It's Hell. I bought a sign that says "You never know strong you are until strong is the only choice you have." I guess I will soon find out. Good luck with your grandparents. Just LOVE 'em. It's all you can do.

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    1. I definitely will. I have mad respect for caregivers because they are the ones who while they do it out of love truly suffer the most stress. It's like I know she has the disease but Grandpa had to learn to do EVERYTHING she did to run the household and this is a man who refused to get on the computer. Some things he's doing okay on and others, not so much. Hang in there girl. I know it's tough and there are no words.

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  9. I understand...it is so hard to lose someone a conversation at a time. :-( Hang in there girlie...she may not remember in her mind, but her SOUL remembers and loves you more than ever!!

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    1. Yeah, that's exactly what it is. Then you torture yourself wishing you'd been a better granddaughter, visiting more than you did, doing more than you did when she was still "here."

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  10. I delt with a similar situation with my Grandma Cheville. My heart goes out to you and your entire family.

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    1. So sorry you can empathize. It's a horrible situation to have to watch.

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  11. I'm so very sorry my friend. I saw my cousin and aunt go through this with my uncle, who was just the most amazing man. There are just no words to describe the long descent into oblivion that this horrendous disease causes. My mom made the comment the other day after her own diagnosis and said, "Shannon, it's always harder for the ones that are left behind." I think that is so true. I wish I had better words of comfort, but sometimes a hug can say more than words ever could. Sending you big, warm, squishy (((hugs))). I think it would be remarkable if down the road and over time, you wrote a book about your grandma. From your earliest memories, to the hardest moments, and everything in between. What a way to honor her. You could tell her story for her. xoxoxoxo

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    1. It is a long descent and I know exactly what my friend meant when she went through it with her mom and called it the longest goodbye. She said by the end, you just pray for God to take them because it seems cruel to keep them alive to endure the dehumanizing process back to infancy. I see what she meant. She just looks so tired and frail all the time and I'd rather see her rest in peace than what her life is spiraling into. I knew that would come but I didn't know it would come so fast.

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