Always on my mind
How do you deal with the declining health of a loved one?
It’s so easy to start to shut someone out as their health declines. At first, you are trying not to be bothersome to them, so you leave them alone, or only make small talk when you visit.
This becomes habitual though, until you have a completely different version of yourself that you present to the ill person. You are cautious, you are careful, you are worried… and eventually you are acting distant towards the person without even realizing it. You start to seclude them, which isn’t good for anyone, ill or not.
Of course, I am speaking of a specific circumstance, but perhaps you can relate.
My grandfather has Lewy Body Dementia. Honestly, I am not sure how long he has had it, but I am old enough to have witnessed the decline in his health.
God, it scares me.
He has had an up and down battle. He was well, then he got shingles. He got better, then he broke his hip. He had to spend months in a nursing home, because my grandma could not take care of him on her own. He’s finally home again.
But the disease is not physical! It affects his alertness, his memory, his speech. It’s so frightening to see this happen to someone I love so much.
There have been times when I visited him and he thought he saw things that weren’t there, or said things that didn’t make any sense. Then there are times (like last weekend in Iowa) when he is the sharp and clever grandpa I remember. I can say “Grandpa, remember when…?” And he responds, “Yes, I do!”
It just feels so tense to me when we (my family) are all around him. Some of us don’t know how to act. Some of us are too nervous to say anything. Some of us are completely at ease.
I try to act myself, be normal, and tell my “funny” stories (my grandparents humor me), but it is so easy to avoid topics that you think might be upsetting or confusing. And then you are starting to shut someone out.
I feel so bad for not being able to spend more time with my grandparents.
Themocracy
I went through the same thing you’re going through now. My grandfather was in decline several years back and we saw it happening. From what I knew to breaking his hip to losing all kinds of weight to be home cared by my grandmother and then mercifully dying. I hate to say I was “happy” to see him die. But he was in pain and he was not going to get better. And they both lived in Florida so seeing them was a task as well. The only thing I’m really happy about is that Katie got to meet him before he died. They got along great. I know he approved. 😉
Ok, I’m going to be a little bit harsh (but I don’t mean it in a horrible way, ok?) You feel bad about not spending time with your grandparents? Then go spend time with them. Your family gets all tense around your grandfather? Go without them. People build off of other’s emotions. One person by themselves will be less tense than a room full of tense people.
Look, your grandfather is still there. His dementia is not yours. Even when he is having a bad day, the soul of him is still in there looking back out at you the same as he always has. I know this, you know this. His decline is just how his natural progression in life is for him. It’s not nice or fair, it just is. Love him anyway. Love him for the essence of who he is, and go and sit with him. You don’t even have to say anything if he is having a bad day, just hang out for a little bit. It will mean more to you BOTH than you can imagine.
My mother has MS, and with that has come some severe dementia (she’s only 52 but has forgotten my name, had episodes where she was more like a 3 yr old, etc.) The thing is, through all of that SHE was still there. Shutting her out would have hurt her, as well as me. You are already hurting, because you know he’s in there. Don’t shut him out because the situation is different and strange and sad. Just love him and be there when you actually CAN – even if it feels off. You don’t have to entertain him, just be there. This is all you have left with him.
I am going thru the same thing with my grandmother (92) and my Great Aunt (93) – they are sisters and are dealing with demetia. They are unfortunately declining very quickly. My Great Aunt is in an assisted living home and does not really remember me at all. She thinks I’m another family member. My Grandmother lives with my mom so that my mom with the help of a part time aid can help her. My grandmother knows my name, but not always entirely sure she knows that I’m her granddaughter or even what the significant of that is. They are very fragile and need a lot of assistance for just about everything. Both have little short term memory left.
My Grandmother has been ill since the beginning of December with a cold that she just can’t shake. This, coupled with past hospital stays that always seem to set her back, makes me believe she is nearing the end very soon.
We are a tight knit family on my mom’s side and both my grandmother and great aunt have been there for all the special occassions and we always got to see each other pretty often.
It is very scary to watch a loved one decline, whether its life’s natural progression or not. I can never feel at ease with life in general, or with going on trips, because I feel that’s when something major will happen and I don’t want to be caught off guard or not around. It’s so very sad, but I try to be thankful that God has allowed two awesome, people to be in my life for as long as they have been. I am thankful for all they have taught them and thankful for all the opportunities I have been giving to say “I love you” to them. I am also thankful for the opportunitites I have had to pitch in and help them when they need it. It’s my way of saying thank you for the bountiful, endless love they have given me my entire life.
I just pray that when their time comes that it is as peaceful and pleasant for them as they have been to the entire world. I also pray that I am able to do whatever I need to do to make them comfortable.
If you can’t be there, send notes, send cards, make phone calls. Trust me I know how hard it is to have a conversation with someone with demetia, but do those things just so you have the opportunity to show you care.
My thoughts are with you Kim, as I know exactly what you are going through.
I think most people can relate to this situation, as unfortunate as it is. Illnesses like these take a toll not only on its host but on the people around it as well. I will keep you and your family in my thought and prayers.
I think the best thing to realize is that the person you love is still in there and is probably more uncomfortable and sad than you are. If you keep yourself in his head, even though it is hard to do, then compassion will take over your fears (which are natural by the way).
When my Grandma was dying, I pushed past that total discomfort to make her feel better then went and cried in the bathroom a lot!
My great Grandma developed a bit of dementia shortly before she died. It became obviously only a month or two before, so it didn’t affect her too badly for long, which was good. At first it was sad, because it made talking to her sometimes difficult, often she didn’t know who I was (she would get me confused with my cousin).
But then towards the end of her life, it actually was kind of nice. I would go and visit her, she was so frail and bed ridden, but she would tell me how tired she was because she had spent the whole day cleaning her apartment and she was excited because her friends were visiting the next day, and she actually seemed happy living in her own world.
It was funny, though, because one minute she would tell me that she had just finished washing her ceiling (leave it to my Grandma to was her ceiling!!), and the next ask me how much trip to Wyoming was last week, which was something that I really had done, so she was aware of real life also.
I don’t have any advice other than just to try to visit as much as you can. If it feels awkward with other people, you mentioned it’s tense, maybe go by yourself? I’m so sorry to hear about your Grandpa 🙁
Kim,
I think we all feel a little of what your dealing with. Not knowing what to say or what to do. Grandpa is always going to be grandpa we know him for him. We well always remember the funny smart and clever grandpa . We all just have to talk to him as if he was the same. If he doesn’t respond right away go on with your convo. He is always listening and trying to understand. I know grandpa was great when you and steven came down. I had like a hour chat with him about whats going on and everything else. It was nice but that doesn’t mean when I come back over next time that he won’t call me Kim.. Which by the way he loves to do :). So your always on his mind. We just have to make him feel as if he is no diffrent . Yes he may say some pretty far out things. We know what’s happening when he says them. Kim what I am trying to say is we all are in the same bracket as you… I see grandpa and see what this lewy body is doing to him and and it scares me and Nick a lot. .. I am here through email and phone if you ever need anyone to talk to you . Love you tons Kim
You’re doing a great job already.
My mom is in her 70s and I’ve noticed her “getting old” the past couple of years. It’s difficult not to treat her differently. I don’t see her as often as I used to and a lot of it is simply because she just latches on and won’t let go when I call her. It’s tough to say, but she’s just a lot more annoying than she used to be. It’s difficult to make time for someone who drains you.
Of course, I balance that with an intense admiration, love, and appreciation for my mother, so I put up with it. But it’s easy to understand how maintaining such relationships gets more difficult as the person ages or becomes physically/mentally impaired.
Well I would love say I am perfect example of what you should do but I am the exact opposite. I have always been told that out of our huge (and believe me my family likes to multiply), I am the person that is most like my grandmother. I am clearly her favorite and I love her to pieces. In 1999, she started having health issues. She lives close enough that I visited regularly. She was pretty much herself until about 2004, then we had to put her in a nursing home (still visited as many times as could to see her) and then 2 years ago was diagnosed with dementia. This is pretty much where my visits declined. She has gone down hill pretty rapidly and I have to admit I probably haven’t visited in 5 months. I used to go every 3 months. I don’t want to remember her like she is now and she hasn’t known who I was anytime in the last 2 years I have visited. The doctors also point out every time we visit that we upset her routine and to remember to keep her to it as much as possible. I understand this actually, it makes her mind more active and causes her much less frustration. She remembers my dad (mostly because he and my grandfather are pretty much mirror images of each other and she misses my grandfather terribly) but pretty much is having that day to day issue of remembering things like night/day, eating/not eating, brushing her hair. I hate seeing her like that and sometimes think my visits do more harm than good because she gets frustrated at not being able to remember who I am. I have even gotten to where I don’t remind her who I am and just act like one of the nurses to help her with her routine that day. I am not sure if that makes me a bad granddaughter or not but I want to remember her as the stubborn, fiesty, southern woman that she was not the sick person that she is now. She wouldn’t want to be remembered that way either. So I guess I am saying I understand what you are going through and I don’t think there is a right/wrong way to approach it or act while you are there. The best you can be is all I think they would ever ask 🙂
Wow. This is a lot of comments to process. I will be back with responses later 🙂
I think any time you spend with your grandparents is valuable time, no matter how little. I never knew either of my grandfathers, and one of my grandmothers died before dementia took its grip (cancer took her instead), but I lived through the dementia decay with my other grandmother. It was hard. Just take baby steps and you’ll make it through.
i’m so sorry your grandfather is suffering from LBD. that must be so difficult as someone who loves him to watch “him” come and go. my grandmother had parkinsons and that was really hard on all of us.
it’s so clear how much you care. the best you can do is give your love as much as you can and appreciate the lucid times. can you maybe call him more often? would that help you feel better?
big hug,
sizz
I am a physician suffering from Lewy Body Disease. I understand how uncomfortable people are when they are around me. But, PLEASE, we as victims of this disease still have feelings, dignity and a need to have respect. Even during my worst moments, I still have a vague sense of how people are treating me. Whenever, they retreat and “change their behavior” toward me, it decreases my self-esteem and self-worth. Please, please, please. Treat us with respect and dignity. We may see things, mutter unintelligible sentences, don’t know where we are and have trouble remembering, but we are still human. Just treat us like everyone else. If your Grandfather had diabetes, heart disease, hypertension, etc., would everyone change their behaviors around him? I doubt it.
Thanks…………David
in my personal opinion…i think its kinda wierd for our family to act wierd aroud pappa…he is the same pappa we have always known and love…it kinda makes me sad to see my own family members to act like that….all we have to do is to tell him whats really going on or whats there…not act wierd..i no that we all are dealing with this and its really tough on our whole family…i have always been pappas little girl always doing things with him when i was younger..and now i have to deal with this and i no that our family will hopefully change