I hate Alzheimer's

Parent Cafe
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<p>I am sure there are many out there who are dealing with this same issue at some level, so I thought this might be a good place for some encouragment/comiseration:</p>

<p>My father is suffering from Alzheimers and has, thankfully, been in a well-run, compassionate residential facility for several years now. My dad is one of the most brilliant individuals I have ever known and he was a very influential clinical psychologist who was well-respected professionally. So this disease is like his own personal version of hell on earth.</p>

<p>Believe it or not, though, there have been some precious “silver linings” to this cloud over these past years, such as my getting closer to my dad during the initial months after his diagnosis (he had to move close to us), his going to church with us while he could (at his insistance…and I had NEVER known him to do that, so those memories are very precious to me), and the fact that my brothers come here to see him and so I get to see them.</p>

<p>He is in steep decline, though, and non-communicative and now pretty much bed-ridden. The facility where he resides called me today to gently suggest that we see about calling in hospice care. There are wonderful people out there who can take great care of him so that he does not have to be moved to a “nursing home”, and I am grateful for that. It just sort of hit me harder than I expected.</p>

<p>Anyone else facing this…you are in my thoughts and prayers. It’s so hard, but I know there is a light at the end of all of this. Sometimes it’s hard to see, though, so I thought maybe we could help each other out.</p>

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<p>churchmusicmom… I will PM you later. I work for a hospice agency, and have spent a lot of time with Alzheimer’s/dementia people in hospice. Have to go run some errands now, but will be in touch later. Let me just say - it’s ALWAYS harder on the loved ones than the patient.</p>

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<p>ChurchMM, I admire your courage and your determination to try to see the silver lining. We watched our mother decline with dementia and it was right up there with the few most difficult things I’ve had to contend with in my life. (and I’ve been most fortunate) I’m sorry that you’re going through this, and just know that there are so many people out there who are trying as best they can to deal with very similar situations. I wish you well.</p>

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<p>Just letting you know that you and your family are in my prayers.</p>

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<p>Friday is World Alzheimer’s Day. Wear purple in support and to draw attention to the disease. There are some t-shirts you can order at Alz. org now that say: voice, open, and move. Voice, because we are now the voices of those who are unable anymore to speak. Move, as in get involved – move to action, such as joining one of the Memory Walks around the country in October. Open, open your wallets towards research and open your arms in compassion.</p>

<p>My mom is stage 6 (out of 7), Early Onset Alzheimers. She’s sixty-four years old. She lives with us as part of our family, and she will continue to do so for as long as we are able … whether it’s 'til the end or not, we don’t know. Each day is an emotional roller coaster and adventure. in adaptation. Talk about life lessons for my kids.</p>

<p>zebes</p>

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<p>My deepest sympathies to those of you who are watching a parent through this awful disease. My father died two years ago this week at 79, and I was always thankful that although he had some physical problems, his mind remained sharp until the end. I do have several aunts and uncles who have or had this disease, and it is awful to watch all traces of them disappear while the body continues its most basic functions (I won’t call it living).</p>

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<p>My dad, also brilliant and accomplished, was taken by Alzheimers. It is a long, slow process for many, and they call it “The Longest Goodbye.” Because he was so smart, I learned several new things during the last two years of his life. </p>

<p>In no particular order, here are some of my discoveries: I learned that I loved just to sit in the same room with him, with the sunlight all over him, even when he could hardly talk any more. I loved him even without all the great conversation that had been the hallmark of our relationship up until then.</p>

<p>We were fortunate that he recognized family members until almost the very end. If he knows who you are, hang onto that because it is very precious.</p>

<p>He was not in pain, and only scared when his care was wrongly adjusted (for awhile, my Mom put him in assisted living after she couldn’t help him any more after 8 years, and Assisted Living was insufficient. But it was her way of hoping that he could be in a “pretty” home and not an ugly one. Soon, she learned he was more content in a home with more care, even though it was ugly (no carpets ‘n’ curtains as in the Assisted Living place) to her. His comfort mattered the most.</p>

<p>She probably kept him alive just by caring for him at home as long as she possibly could, before it became too dangerous. He was much larger and heavier, so when he wandered, or fell out of bed, she eventually couldn’t physically manage to get him back to bed. That, and not the wearying caregiving, was what finally caused her to move him out of their home. Then she visited him daily.</p>

<p>She made friends with some other women visiting their husbands then. One was a concert pianist, and he still played for a long time at the home. Now, with both men gone, the two widows are best friends, and visit each other often.</p>

<p>Sometimes he’d still surprise us, and we’d treasure those stories. Like the day he was chided by staff for bad language, and my mom said, "all you say is ‘shut up.’ Can’t you think of a new word? He answered, “It’s 2 words.” Now that was so far above the cognitive level he was showing, day in and day out, that you wonder how much and how little is there. You just can’t measure some things, and the insight changes, both less and more than you’d expect. You just can’t pin it down, so don’t try!</p>

<p>We had to adjust, as a family, to how we processed news and TV with him. At first, he and my Mom enjoyed watching old musicals on the VHS together. He had been a great news-hound in his life, but when it was Sept. 11, 2001 and the news was playing on the tv at the nursing home, she decided to tell him it was a fire in a Boston neighborhood, so he wouldn’t be unduly scared by the repeated pictures. Today, we all miss him a lot whenever it’s election day (local or national), remembering how he’d watch and react to election news in earlier years. </p>

<p>Following my mom’s wishes, all the 5 grandchildren said their own word of eulogy at his funeral. While the older 2 had clear memories of growing up around him, and understood his mental greatness, the youngest one (then 14) missed all of that. But what he said was moving. He said, “I am almost jealous that I didn’t know him as much as the others in the room here, but the last time I visited him, as I left he said, “I love you, J–.” So I might know the most important thing about him, which is that until the very very end of his life, he was a loving man.”</p>

<p>This disease might make you question, deeply, what you think it is to BE a person. It is lonely to see the personality and thoughts vanish, leaving only the body. But it is also heartening when you realize that they are not in physical pain. They don’t know they’re lost, only you know. That’s why they say it’s hardest on those around him. So this lets you return your love for him by realizing that you care more that he’s comfortable. Meanwhile, you can learn to deal with your own sadness since you’re still in charge of your thoughts. Love is always unselfish like that. </p>

<p>And so my Dad continued to teach me new stuff until the day he actually died. I have a feeling you’ll also learn lessons from your Dad at this end-stage. So even if he’s not talking brilliantly, you’re still learning great things from him. </p>

<p>My heart and thoughts are with you as you all face this journey together.</p>

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<p>Thanks to all who have taken the time to respond with prayers and comments. It means a lot!
Zebes, bless your heart for being able to have your mom live with you! My dad, in earlier stages, was just beyond my ability to care for, plus he would not have wanted to live with us. For a while, he thought he was either staying in a new “condo” and thus had a sense of still being independent, or he would take on the role of “clinician” and even tried at times to get other residents into group sessions for therapy! I did have wonderful times, though, taking him all different places with me and just spending time with him. I will always cherish that.</p>

<p>P3T, thanks so much for your thoughtful and beautiful reply. </p>

<p>I regret to say that I have not spent as much time with my dad recently as I feel I should. For the first three years, or so of this process, we spent at least part of almost every day together. After I had major surgery, I was unable to do that for quite a long time. It seemed during that interval, he pretty much stopped recognizing me, so it became more painful (for me) to see him and less critical that I be there, or so I would tell myself. Right now I am pretty much torn up by feeling guilty for not spending enough time with him…</p>

<p>I do know that he has wonderful care where he is, though, and that he is not in pain.</p>

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<p>Churchmusicmom, as a parent, would you want your kids to be filled with guilt, or would you want them to enjoy life and cherish the memories you’ve made together? In difficult times, I think people should try to be kind to themselves – I’m sure you’ve done your best under difficult circumstances and that whatever part of your Dad that remains is aware of that.</p>

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<p>CMM, I don’t have any experience with this in any of our family. Just wanted to post to say how sorry I am that you are going through this.</p>

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<p>Dear Churchmusicmom,</p>

<p>There are no “shoulds” here. There is only the best we can do. Please do not give yourself a hard time because you were limited due to your surgery. Can you imagine that your loving father would have wanted you to neglect your health to keep him company? From what you write about him, I’m guessing that the answer to that question is “no.”</p>

<p>This truly is much harder for us than it is for them. I believe that profoundly. Do not make it harder on yourself than it is on its own.</p>

<p>Warmly,</p>

<p>mafool</p>

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<p>churchmusicmom,
I am sending warm hugs and understanding your way. </p>

<p>My dad is caring for my mom (totally bedridden), grandmother (now in her 90s and slowly failing) and aunt (housebound). We kids try to help, but he insists on doing it all himself. It is tremendously difficult to watch (four of the five of us are out of town); my sister who is local has earned her haloel’s halo many times over in the way she’s there for my folks. Speaking from a kid’s point of view (albeit a 46 yo one), it makes me sad and angry that my dad shuts out everyone who’s trying to make his burden lighter, even if it’s only for the short time we can be there.</p>

<p>If you can share the load among siblings, spouse, kids, and support staff, please do so. It gives them a chance to show they care and alleviate some of the feelings of helplessness we all feel at times when a loved one is ill. Be gentle on yourself. Focus on the silver linings and don’t beat yourself up about the rest.</p>

<p>p3t, your post made me cry. What a wonderful father you had – and what an amazing daughter he raised!</p>

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<p>p3t - so many people who are given a terminal diagnosis ask difficult questions, such as, 'Why am I still here. I’m ready to go." Your story illustrates how everyone continues to leave their mark on this world, up until their last breath. Our best hope is that they are pain free, and at peace. Sometimes we don’t know what it is they are giving back at that moment when they have lost all consciousness and can’t utter a word, but perhaps the next day, the next week, the next month, or next year, we will realize the wisdom they are imparting upon us. This is the belief that gives hospice workers such hope that everything we do is worth it.</p>

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<p>churchmusicmom, </p>

<p>Don’t beat yourself up about your decision. We all have to do what’s best for our families, and I have no idea what our future will bring either. Life is so daily … we take it one breath at a time. And guilt should not even be in the equation … our parents wouldn’t want it to be that way.</p>

<p>zebes</p>

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<p>All of you- lovely posts. Thanks for giving me the nudge to think of my Dad, who has been gone a long time. He was my best friend, and my four year old’s best friend also. Yes, I’m crying.</p>

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<p>Wow, how beautiful.</p>

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<p>You all are amazing and I thank you for being there and reaching out. I feel we are all in this together in that we may be facing a similar situation and know we have companionship along the way or, we know to appreciate more the good times we have.</p>

<p>Thanks also for the incredible pm’s. Again, amazing!</p>

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<p>Church… My heart goes out to you…</p>

<p>My dad (87) is taking Aricept (alzheimer med), and while it helps a lot, there are still moments that are very frustrating - such as when he thinks someone is trying to rip him off and he gets rude (sometimes he forgets what current prices are). </p>

<p>Since my dad’s older brother had alzheimers also (but died before Aricept was available) we are hoping that the meds will prevent the extreme his brother (and family) went thru. My normally very nice uncle became very mean and violent - it was awful. He kept accusing people of stealing his money. He also kept thinking someone had kidnapped him and kept calling 911. We are hoping and praying that Aricept will prevent that type of decline in my dad. </p>

<p>I know it broke my m-i-l’s heart when her mom (grandma Kate) didn’t recognize her anymore.</p>

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<p>Doesn’t it seem that alzheimer’s (or dementia or senility) is so much more prevalent now than when we were young? It seems so to me.</p>

<p>It’s heartbreaking when some of the brightest, most interesting and engaging people spend the last years of their lives not as themselves, and that grandchildren and others will never know (or over the years will forget) the amazing people they were before. It’s just so unfair.</p>

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<p>More diseases of the aging now, because people are living longer. When we were kids, folks died of other stuff before their brain wore out. </p>

<p>I’m not complaining. Just hoping that something else gets me first before my brain melts.</p>