You Heard It Here: The Tough Times

It dawned on me June 6 that I never posted my first of the month Hollywood story and I had a mini freak-out. I couldn’t believe I missed a post. Then I remembered where I was and why I missed it.

People who frequent my FaceBook page know I’ve been dealing with a family emergency, but I’ve been a little cryptic. I’ve decided to come out and just talk about it because I know I’m not the only one going through this. My dad has Alzheimer’s and my brother, sister and I decided it was time he receive more care so I took trip to Texas to facilitate a move.

My dad knew I belonged to him, but he didn’t really understand how. He called my by his little brother’s name all week. I was actually kind of glad he remembered that much. The hardest part about the whole thing was watching his confusion. When asked a question, he was unable to understand or answer it. He learned years ago to speak to people with generic responses so that they really didn’t understand that he didn’t understand what they were saying. (Of course, it doesn’t help that my father is deaf, which takes understanding to a different level.)

I won’t go into the details since they aren’t happy or fun. Anyone who’s dealt with a loved one with Alzheimer’s understands the difficulty. Watching my father’s decline is truly one of the hardest things I think I’ve ever gone through. No one imagines they will be in this position until it happens to them, I guarantee it. I never thought I’d be feeding my father or trying to explain to him where he was or who I was. I never thought I’d see him look so frail and old. He’s turned into a different man.

(This is a diagram of the brain in different stages of Alzheimer’s.)

ADfactsheetbrainimagessmaller

I’ve said it to my family and I’ll say it to the world… If I die suddenly, you can be shocked, you can miss me, you can even be sad (for a little while) that I’m not around, but ultimately, I want you to be happy that I didn’t die from a terrible, debilitating disease. I once saw a poster that said, “Getting old isn’t for sissies.” That is the damn truth.

Already, I’ve begun to prep my daughter on what I want her to do and don’t want her to do should I follow in my father’s footsteps. I don’t want her feeling guilty, I want her to leave my care to professionals who deal with this kind of disease on a regular basis. I want her to live and enjoy her life to the best of her ability. Let’s face it, I didn’t do my kid any favors by making her an only child, but I’m sure she’ll have a support system by way of cousins, family and friends. The fact that she’s ultimately alone when it comes to the decision making is only another reason I don’t want her to worry about me. Hell, I won’t know the difference.

Anyway… that’s been my life lately. How about you? How healthy are your parents? Have you reached the point where the child is taking care of the parent?

 

Comments

You Heard It Here: The Tough Times — 38 Comments

  1. Hugs, Dee. I had an uncle who had Alzheimer’s, but I can only imagine how tough this has been for your family. You’re in my thoughts and prayers.

    • Hi Angela,
      Thank you. I appreciate it. It’s been a very tough couple of weeks watching his downfall. Ugh…

  2. I’m so sorry your dad has to go through this, but on the plus side he isn’t aware of his situation. You, on the other hand, carry the emotional brunt of this devastating and often times protracted illness.
    It’s so sad to watch the decline of a loved one and not be able to do a damn thing about it. Hugs to all!

    • Hi Robena,
      Thanks. I keep telling myself the same thing. He has no idea what’s happening. Then I try to practice what I preach to my daughter, but it’s hard. Hugs always welcome. Thanks.

  3. Hi Dee- hugs on your family struggles. I can say we’ve had friends go thru this with their family and it’s very very difficult. My mom used to say, “Don’t get old.” It’s hard to watch someone you’ve admired and loved change into someone you don’t recognize. It a way, they are already gone to you…so you are grieving while they are still with us. Sending hugs and prayers to you.

    • Hi Charlene,
      It’s true. I’ve totally been grieving the loss of the man I used to know. And trust me…I don’t want to get old. It’s a brutal road. Thanks for the hugs. I’ll take all I can get.

  4. You did a beautiful job describing the angst involved with elderly parents. It’s so hard just being old, but as old as my father is I can’t imagine the pain of him not knowing who I am. Love what you plan to tell your daughter.

    • Hi Jo Ann,
      Your dad is amazing. I love that he’s still going strong at 90 something. I just know I don’t want my daughter to feel the way I’ve been feeling, so I want to nip that in the bud ASAP. My dad is doing better with strangers, so I imagine I might too. There’s no need for her to be ripped up about it. (Now to follow my own advice…)

  5. So sorry to hear about your dad, Dee. I close friend of mine is losing her best friend to this horrible disease, so I’m seeing a tiny slice of how horrible it is. My friend formed a team, the Brixton Belles, for the annual Alzheimers Walk in November too, which may be of interest. And I’m with you, I want my kids to see that I’m getting treated kindly by people with expertise, then otherwise live their lives happy. Isn’t that what parents want for their kids? Big hugs to you.

    • Hi Kady,
      Thank you. All hugs appreciated. Yes, I think all parents do want their kids to be happy so I hope if I reinforce that enough now, my kid will believe it (if and when the time comes and it’s necessary). I’ll have to look into the Brixton Belles. Thanks.

  6. Your blog came at just the right time for me. I’ve also been cryptic on my fb page re needing good thoughts. My dad is dealing with prostate cancer, which last year metasticized to the bone, and we just found out last week that there is a mass on the lung. Like you, my parents are far away, also in Texas, and I feel helpless here. I am also an only child, and the responsibility of what ultimately will happen with my parents falls to me. My mother already has numerous health problems (heart, lungs, spine) which has rendered her virtually housebound with my dad her caretaker. So far, his cancer treatments have not been too taxing, but that will probably change with the lung issue. I have no idea how my parents will be able to stay self-sufficient if my dad has to do chemo or surgery, even if I go down there every few months. I’m glad you’ve talked to your daughter. While I’ve grown used to dealing with my mom’s problems, at least one parent was always healthy. I want to do whatever I can, but the fact is I can’t be there 24/7. You have my sympathies also dealing with aging parents, and having seen my grandmother go thru dementia, I understand your feelings. I wish there was a guidebook for this!

    • Hi Melissa,
      Oh man, I’m so sorry. You’re facing a double whammy. I can only suggest that you hint at your parents moving into an assisted living facility. They will need more care than they are able to give each other and it will relieve the burden on you knowing they have help at their disposal 24 hours a day. Taking that first step and moving my dad was the beginning of a very tough road, but it was necessary. I don’t know how old your parents are, but their health issues alone seem to warrant a change in their lifestyle/living arrangements. What ever happens, I wish you all the best. I know how you’re feeling.

  7. Dee J.,

    I’m so sorry for the reality you’re facing. As you know, I’ve been walking in your shoes for the past couple of years. I can truly say that I know how you feel, and how your heart breaks for the memory of the father you once knew and will never ‘see’ again.

    The best advice I can give you (not that you asked for it) is to enjoy your father’s company as best you can when you see him. I have built some fabulous new memories with my mom even though she isn’t the mother I grew up with. Thankfully, my mom can laugh at herself and when she can’t remember something she thinks it’s funny – and it usually is!

    I do think you’ve done the right thing by moving him into a facility where there are well-trained professionals to care for him. Hopefully, you or other family members will be able to visit fairly often. I’ve found my visits several times a week to my mother help keep her spirits up and, I think, help her mind as well.

    I’m sorry you’re facing this. Please let me know if there is anything I can do to help.

    • Hi Kathy,
      Thanks. I know you’ve been dealing with parent issues too. I wish I could visit my dad regularly, but my siblings and I live in CA and my dad is in TX. It makes it that much harder on us, not being able to see him more often. We tried for years to get him to move out nearer to us and he always refused. Unfortunately, he’s passed the stage of new memories. (At least enjoyable ones.) I’m glad your mother is in a place where her spirits can be lifted. I’ll keep you all in my thoughts and prayers.

  8. Hey hon, I get it. My mom had multiple sclerosis plus a bit of dementia. Mobility, memory and hearing issues. She passed on in 2007, but I made sure my husband and both kids knew that I didn’t want that kind of life for myself.

    My dad, on the other hand, is doing well but he’s 84, and growing more fragile. It is hard. We’re in the “sandwich” generation, caught between parents who need us and children who need us. Bless you for being there for your dad, and sending hugs!

    • Hi Christine,
      I’m glad your dad is doing well. I also lost my mom…back in 97. That was another long slide due to cancer. I think this is worse, but really, it’s all just plain hard. Hugs appreciated. Thank you. And I’ll keep good thoughts that your dad continues to do well.

  9. Hi Dee J – thank you for sharing your story. When I cared for my mother the last few months of her life, when she had a brain tumor and was on hospice, I got really frazzled at times. Trying to juggle my regular life, and giving her the time and consideration she deserved got pretty tough at times. A friend of the family saw me stressed and oversensitive about something my mother had said to me. My friend said, you need to let caregivers take over so you can be her daughter. She needs you as a daughter more than a person seeing to all of her needs.

    That really put it into perspective for me, and we made changes in her care from that point on.

    hugs and prayers winging your way through cyberspace,
    Lynne

    • Hi Lynne,
      Thank you. Yes, I realize I can’t be his caregiver. I’m not as equipped to handle him as professionals and apparently I’m not good at it as I was asked to leave his room by a nurse. In general, my presence aggravates him because he realizes he should know me, but he doesn’t. At least that’s how I take it. Who knows… I just take each day/hour at a time and I’m trying to let the universe show me the way. Thanks for the hugs. Much appreciated.

  10. Hugs to you, have dealt with these issues in a close friend and a family member, also from a distance so I relate to every word you shared with us. In the case of the family member, who also had cancer, hospice was the only thing that helped my brother and me through the final stages. SO hard for all concerned. Sending you many good wishes, and also for your daughter!

    • Hi Veronica,
      Thank you. I’ll be honest… I never would’ve seen this coming. I mean, I knew it was coming, but I just didn’t think it would be this bad. Hugs much appreciated.

  11. My heart aches for you and your family. End of life issues are a real challenge. Keep looking for the sweet memories in the midst of all the bitter. More hugs……

    • Hi Christine,
      Thank you. Today I called to check on him and the social worker kept talking about how all the nurses adore him and how sweet he is. That is the daddy I remember, but not the one I saw the last time I was with him. Thanks for the hugs. Always appreciated.

  12. My mother is currently in a nursing home, but at least she knows me. I can’t imagine how tough this must be on you. Please remember to take care of yourself.

    • Hi Jana,
      I’m sorry about your mother, but glad she’s getting the care she needs and really glad she knows you. I’ll admit, I didn’t have the time to take care of myself during my last visit. It was “All Daddy All the Time.” I was a distant second, which turned out didn’t do any of us any good. I’m working on it though. Thanks for the reminder.

  13. Oh Dee J., you’re in my thoughts. I know about losing a father, but not through Alzheimer’s, which I think is a situation fraught with unique issues and challenges. But what did resonate with me was your thoughts about trying to protect your daughter from the situation you’re in now. The wonderful thing is, by being their for your dad, you’re showing her family matters, that staying invested in someone even when it’s not fun, or rewarding, (or perhaps even recognized), matters. You’re showing her how to be strong, and loving, and make tough decisions. Hopefully she’ll never need those skills in dealing with her mom, (who will live to be 150, and die in her sleep after finishing final edits on her 200th bestseller), but sometime in her life, she’ll need those skills.

    • Hi Sam,
      Damn… I was hoping to die much younger than 150 and I’d hoped it would be after an outstanding orgasm. But… I guess your way is good too.
      Seriously, you are very sweet. If you’d seen me last week in Texas, you wouldn’t have described me as very strong. After seven days of dealing my father, I was a wreck. So was he. Luckily – or not so luckily – my daughter is very sensitive, so I want to drill in her head that guilt is not a word to have in her vocabulary. I only hope you are right that she never has to experience this situation. Thank you so much for your kind words. You made me laugh through my tears… the mark of a great writer, right?

  14. Hi Dee,
    I am so sorry to hear about your dad. That super sucks about his Alzheimer’s. I am so impressed with how you are sharing your story and processing it. It is very inspiring. Thanks for your strength and for letting us know you a bit. I am honored and proud to know you,
    Xo
    Christine

    • Hi Christine,
      First of all, thank you. You are very sweet. It does absolutely super suck. (But I love that you made me smile. I may steal it, but I promise to give you credit.) I’m very much like my mother in that I tend to over-share. Granted, she did it with close friends, but it helps to get this out and hear that other people face similar issues. It makes me glad to know I’m not alone in that respect. I don’t know about strength… I’m just doing the best I can. I can’t control it, so I have to roll with it. That’s kind of my life motto right now. Thanks again for your kind words.

  15. Hi, Dee.

    That’s a hard situation to deal with; I can’t even imagine. However, I do know what it is like to deal with disabilities (and this is much like a disability), and the best suggestion I can give you is to find support. There are other people who have gone through this, who are willing to help. But also be choosy about the people who you pick to help you; some people will only bring you down.

    Since you are moving to facilitate this, you probably will need all the support you can get.

    • Hi Tia,
      I’m lucky that I have a wonderful husband and my brother and sister to help. My siblings and I take turns flying to Texas to make sure our dad is getting the best possible care. A good support system makes all the difference. I learned that during my mother’s cancer. Very good advice to remember, thank you.

  16. My grandmother–to whom my debut novel is dedicated–suffered with Alzheimer’s the final nine years of her life. It was extremely hard to watch a woman who’d been so vibrant and feisty all of her life decline so rapidly. My heart is with you and your family. I know your father appreciates everything you are doing for him, even if he doesn’t always remember who you are. Hugs!

    • Hi Reese,
      So sorry you had to go through this with your grandmother and thank you for the sentiment. I tell myself that my dad would appreciate everything we do and try to do for him, but sometimes that little voice gets lost in the reality of the situation. I can only do the best I can on any given day and given any situation. Sometimes he makes it more difficult. Thanks for the hugs. Always appreciated.

  17. It’s always easier to give advice than to follow our own fabulous words of wisdom. If it helps you follow your own words, remember that how you live your life, what you do rather than what you say, will have more impact on your daughter.

    Remember that there’s always a little guilt for what we did or didn’t do with people we love. It’s okay. The guilt helps us do better the next time. There’s always some tears (or possibly a downright deluge) and that’s okay too. Grief is a stage and it’s better to experience it rather than store it up for “later”.

    My dad had cancer and there were good and bad moments in that. Mom and I have already talked about her and when she gets tot he point of not being able to live on her own. I plan on making those plans for myself – I’ll be looking into a place that has stages of care. I’ll be moving there when it gets to the point of retirement or I can’t make it up the freaking stairs anymore whichever comes first. Okay, I think I have to wait another 4 years before I can move into any of those places, but it’s only 4 years.

    Big hugs to you and know that if you need to have coffee or just want to meet to scream, I am just a phone call and a short, depending on traffic, drive away. I know you’ve got plenty of family and friends, but the offer is always there.

    PS: You are doing great.

    • Hi Maria,
      Thank you. Very sweet of you to offer. I keep telling my daughter that I plan to put myself away before she’ll get a chance to. I just hope I follow through. Yes, I’ve dealt with the “deluge” of tears. That was last week. I felt bad for the people at the airport stuck looking at me. Guilt is another thing I’m trying to deal with being so far from my dad when he’s going through this. There’s just no way around it. I can’t think about it too much or it will wipe me out. One day at a time for me… hell, one hour at a time at this point. Thanks again for your support.

  18. Dee, I’m so sorry you’re going through this. *hugs*

    I grew up without a dad and although I have a mom, my grandparents pretty much raised me. My uncle and I took care of my grandfather after he had heart surgery and his lungs didn’t quite recover. He was on a ventilator for over a year. They had to move him to a care facility in another city. My uncle went with him. I stayed to take care of my grandma. He was weaning off the ventilator and projected to maybe come home when an infection went septic and he died. Six months later, my grandmother had an aneurysm. My uncle and I took care of her and she made a 100 percent recovery. A few years later she kept getting pneumonia. Twice the doctors suggested we pull the plug and twice my uncle and I refused saying they didn’t know her like we did. The fourth time in the ICU, about two years after the first time, she told us she was tired of fighting. I think one of the hardest times in my life was that process of letting go.

    Don’t forget to take care of you. I hope you have a lot of people to hug and support you.

    • Hi Shawna,
      Wow… First, thank you for sharing your story. I’m crying as I type this. I totally feel the love you have for your grandparents and it shows in all you did for both of them. My mom was very similar. After 13 years of fighting cancer, she just finally quit one day and she died 4 days later. Once she made that decision, her body just said, “done.” Letting go is so hard not to mention watching the people who raised us decline as the days pass. I’m still working on the taking care of me part, but I do have people to hug.

      Thanks for coming by and sharing your story. Hugs back at ya.