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Thread: Please...

  1. #1
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    Feb 2007
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    Default Please...

    Does anyone have experience with aging parents and dementia? I'm looking for assistance and I'm not sure where to go. My parents live together. Dad will be 83 this week and my Mom is starting to fail. It's more than forgetting things or watching her personality change. We're facing the dreaded "It's time to stop driving" and I'd love to find a way to support her. It's ugly right now...
    With a hurting heart (and much thanks if you've gotten this far...),
    Michele
    IN THE END, ONLY KINDNESS MATTERS
    Mom to 5 girls and 5 furry kids too
    21 Years Homeschooling and still learning

  2. #2
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    Feb 2007
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    Alabama
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    Michele -- do your parents live close to you or far away? Are they close to any relatives/children?

    Are they willing to considering moving to a care home -- not necessarily nursing home, but some kind of care facility?

    Wife to Jim and Mama to Katie (1/01), Mattie (9/02), Cale (4/05), and Ben (8/08)

  3. #3
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    Feb 2007
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    Honey, I'm so sorry.

    We've been walking this road with my mom for a few years now. It is AWFUL. I took Mom's keys, and her car, away from her a year ago last October. In hindsight it should have been done much sooner. My sister and I tried many things, including in-home health care, trying to find a live-in care giver, and many other things. Mom was hanging on desperately to what she viewed as her "independence." In reality, she had already lost her independence and by allowing her to continue to cling to her illusions, we lost precious time in getting her the help she needed. Again, in hindsight, my sister and I regret not moving her into an assisted living facility years before we did. Although she would have fought it in the beginning, and did fight it when we made the decision (even though she actually asked us to make the move), waiting cost her at least a couple of years of happiness.

    She feels much more secure, much safer, and much less lonely, where she lives. Though she saw my sister daily, it wasn't the same as living with someone. However, she wasn't willing to live with anyone except my dad, and he was gone. Now, she lives in an apartment in an assisted living facility. All her needs are met, she lives with a lot of people, has access to many different activities, but has her own space to retreat to when she wants to be alone. She brought her dog with her.

    One thing I learned in this process is that while it's not a good idea to force a move for an otherwise healthy senior who has an active life and a vibrant community, it's vital for someone who has dementia or Alzheimer's to get into a memory care facility as soon as possible. Things that help folks with dementia are human interaction, stability of routine, good nutrition, physical activity, and classes / activities geared toward mental stimulation. A memory care facility is set up for this.

    In our area, there are many levels of care available. Not all care homes have all levels available. I was able to find a place that fit Mom's personality, allowed her dog (a deal breaker), and matched her current level of need along with what we project her future needs to be.

    What a relief! Is it perfect? Um, nope. But it's such a burden off our shoulders to have these extra eyes looking out for Mom (and Fender), extra hands to do for Mom, and people who are watching out for her while still helping her feel independent. Her housekeeping and laundry are done for her, she eats meals in the dining room, and she enjoys the activities and the people. Because she doesn't have a yard, and therefore no pet door, she is walking that dog around the block 3-5 times daily. And the staff picks up after the dog. Mom's meds are monitored, her glucose levels are checked and recorded, if she feels off I am notified right away instead things progressing to a bad place because she didn't want to admit she was sick (she doesn't like going to the doctor). There are places here where married folks can live together.

    I am so sorry you are facing this. Almost every day, I think "this is not where I thought we'd be." My relatives have all lived to their 80s, 90s, and even older, and no hint of dementia anywhere, until Mom. I never expected she would be dealing with this. It's heartbreaking. It's angry-making. It's life-draining. I am so sorry.
    Robin, wife for 22 years to a wonderful man, and mama to 20yo Belle; 18yo Kitty; 14yo Princess, and 12yo Boyo.
    Words for 2015 and 2016 and probably forever: Be her.

  4. #4
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    Feb 2007
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    I'm sorry, it's a hard road to walk. I'd highly urge you to get the book The 36 Hour Day. I will offer you invaluable input, resources, & suggestions. Do you have an open line of communication with your parents right now? What about their GP? If you don't have one with the GP now is the time to get one, if you do have one schedule yourself to go see him with, or without, your Mamma.

    We found the quickest way to get the help for my MIL that we needed was to scheduled ourselves in. It is NOT easy to sit in front of my MIL & say to the Dr, “No, that’s not good enough..” or “She can’t tell time anymore & calls us at 645 & thinks it’s 9am..” BUT, expressing what we were dealing with allowed the GP to get a fuller picture vs the in-office tests that he was doing. It also got immediate action for a referral to a dementia specialist for MIL. It's hard for parents to let go of things, very hard. When we know it's something my MIL can't/won't let go of, we do our best to get a medical person to tell her it's time. Thankfully driving wasn't an issue because the only place the woman ever drove was through the garage door. But we do have other issues that are a daily battle at times. I don't know about stateside, but where we are we have a nurse in our corner, she is our go-between & when things start dipping we confide in her so there's a record of what's going on.

    I'd second every last word of Robin said. The sticky situation we are in with my MIL right now is that she needs to get into a memory care facility, but she's terrified of the idea of a home. In the mean time I'm burning the candle at both ends to help her. We have to call her frequently to remind her to take her medication & then watch her do it. I fend calls frequently from her carers & senior groups asking where she is. She got it in her mind recently to go for a wander. The woman can't walk 12' to her mailbox without being in pain, but her GP upped her pain medication & she took it upon herself to walk 4k's, & then promptly burst into tears because she really wasn't sure why she'd done it. She has no clue what dementia is, & sadly it's a little hard to tell her it's a form of terminal brain damage, & instead we just have to calm her down & explain how a telephone works again.. or point out that I am not 18 but 42 & perfectly capable of driving her to the movie theatre to catch up with her senior group.

    Also, even prior to a diagnosis I’d urge you to keep a record of what you are dealing with. I’ve been doing this for a couple of years now via iCal. I record whatever we are dealing with.. forgetting to use the microwave? It’s been recorded, Fall? It was recorded. But I go beyond that to record her mood swings too. I keep a record of where she’s suppose to be & when. Who is in the home caring for her {we have 3 ladies who come in for home help various times during the week} .. if she has a sub come in for some reason I make a note of it, because moving outside of her normal routine is HARD for her. She had a sub last week & she kept telling us she thought she needed to lodge a complaint because the person was a real weird-o. Once we got more info out of her, it really boiled down to the sub not doing things the same way as the normal girl.

    Join a support group for yourself, it’s worth it just to have other’s who GET why you are tired, why you don’t want to go out & socialise, & why somedays just keeping from having a break down is all you have strength for.
    Kendra, wife of Lawrence, mother of three.

    I would be most content if my children grew up to be the kind of people who think decorating consists mostly of building enough bookshelves.

  5. #5
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    Feb 2007
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    Michele, nothing to say, other than you are all in my prayers and thoughts. I'm thinking of you a lot.
    "There is no peace that cannot be found in the present moment." - Tasha Tudor

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