tag:blogger.com,1999:blog-3649118720488149471.post7660332278244263345..comments2023-12-27T00:52:05.523-08:00Comments on Dementia Diaries: A Journey With Dementia: The Lonely RoadUnknownnoreply@blogger.comBlogger13125tag:blogger.com,1999:blog-3649118720488149471.post-23527043680568152342018-01-16T16:16:36.670-08:002018-01-16T16:16:36.670-08:00I don't think it's very fair to tell anyon...I don't think it's very fair to tell anyone to leave out their thoughts. I started this blog to share the journey, the WHOLE journey...the good, the bad, the ugly. Sadly, this is how many caregivers feel throughout their journey. I'm willing to bet that most, if not all, caregivers have experienced loneliness, isolation and discouragement. As expressed in my post, I am very grateful for all of the help that we have received. That does not mean that one cannot feel disappointment in the people who have abandoned them. I wonder if you have ever experienced this firsthand?Cassandrahttps://www.blogger.com/profile/06151048661050906612noreply@blogger.comtag:blogger.com,1999:blog-3649118720488149471.post-85325790121054562532017-12-12T07:10:13.145-08:002017-12-12T07:10:13.145-08:00Perhaps the negative thoughts and assumptions shou...Perhaps the negative thoughts and assumptions should be left out of your comments. I sincerely hope you are grateful for whatever services people can render. Saying some haven't given as much as other leaves open the question "is she talking about me? This was a multi-issue post you made. I was addressing solely the point you made about those who you say are not helpful or as helpful as they could be. Thank you for sharing your article. If you interested to know more information please visit http://onedaytop.com/three-beautiful-natural-wonders-can-see-within-us/<br /><br />Anonymoushttps://www.blogger.com/profile/12494423740095742620noreply@blogger.comtag:blogger.com,1999:blog-3649118720488149471.post-60084874566555755072017-01-20T13:52:24.981-08:002017-01-20T13:52:24.981-08:00I'm so sorry about your mom :( We do not have ...I'm so sorry about your mom :( We do not have a go fund me page, but I do have a pay pal link on this page (top right) for my mom's personal caregiving fund. Also, check out The DEANA foundation tab which is the non-profit I created to help other families going through this!Cassandrahttps://www.blogger.com/profile/06151048661050906612noreply@blogger.comtag:blogger.com,1999:blog-3649118720488149471.post-3371982629512722572017-01-15T02:56:12.737-08:002017-01-15T02:56:12.737-08:00Dec 21, 2016 was your last post, how is your mom d...Dec 21, 2016 was your last post, how is your mom doing. Dec 3rd 2016 I lost my mom to this disease. It's an incredible lonely road. Do u have a go fund me page? Please let me know at jg@jacquelineproperties.com Anonymoushttps://www.blogger.com/profile/01264980471856962418noreply@blogger.comtag:blogger.com,1999:blog-3649118720488149471.post-46226146113770981702017-01-15T02:53:57.497-08:002017-01-15T02:53:57.497-08:00Dec 21, 2016 was your last post, how is your mom d...Dec 21, 2016 was your last post, how is your mom doing. Dec 3rd 2016 I lost my mom to this disease. It's an incredible lonely road. Do u have a go fund me page? Please let me know at jg@jacquelineproperties.com Anonymoushttps://www.blogger.com/profile/01264980471856962418noreply@blogger.comtag:blogger.com,1999:blog-3649118720488149471.post-56321645865220018602017-01-15T02:53:56.949-08:002017-01-15T02:53:56.949-08:00Dec 21, 2016 was your last post, how is your mom d...Dec 21, 2016 was your last post, how is your mom doing. Dec 3rd 2016 I lost my mom to this disease. It's an incredible lonely road. Do u have a go fund me page? Please let me know at jg@jacquelineproperties.com Anonymoushttps://www.blogger.com/profile/01264980471856962418noreply@blogger.comtag:blogger.com,1999:blog-3649118720488149471.post-65602758248402411332016-12-28T09:05:24.335-08:002016-12-28T09:05:24.335-08:00Sadly, you missed my point entirely. This was a mu...Sadly, you missed my point entirely. This was a multi-issue post you made. I was addressing solely the point you made about those who you say are not helpful or as helpful as they could be. I may not be "concerned" about hurt feelings because I know of none. That being the case, it just might be others are not so aware either. I'm just concerned about those who are on the edge of being able to give or give more. <br /><br />I refer to your statement: "With as many people who have reached out to us, there are equally as many who have rarely acknowledged the situation. People that my mom have worked with or served with at church; women, who at one time or another my mom has considered to be very close and dear friends, who have never once visited her since her diagnosis or even call to ask how she's doing (the same goes for my dad)." While I don't doubt that is disheartening, I am concerned it sounds like an indictment. Maybe it could have been said another way is my point. I think it would give you a lift in spirits. It's a tough road you have to travel, and I feel your pain. Clearly not as deeply as you do, after all, she IS your mother between whom there's a special bond beyond those of siblings. Another point I wanted to make was the vagary in mentioning family. It wouldn't be proper to mention names, I know. But on the other hand I don't see the purpose in leaving doubt in minds of those who wonder who you mean. Call it guilt, call it anything you want, I just wish it was not mentioned at all for everyone's sake. We can discuss this further in person if you like because some things I don't want to mention in an open forum that might be insightful.Michaelhttps://www.blogger.com/profile/15120227319078536460noreply@blogger.comtag:blogger.com,1999:blog-3649118720488149471.post-31083171548425377782016-12-27T21:20:21.133-08:002016-12-27T21:20:21.133-08:00Great analogy with the pool. Sorry you've had ...Great analogy with the pool. Sorry you've had to go through this. Our situations are different but also similar in many ways. Sending you much love! Cassandrahttps://www.blogger.com/profile/06151048661050906612noreply@blogger.comtag:blogger.com,1999:blog-3649118720488149471.post-70082433572182619652016-12-27T21:15:42.313-08:002016-12-27T21:15:42.313-08:00I think I was very clear in expressing my gratitud...I think I was very clear in expressing my gratitude to those who have shown up and given service to our family and been there for us emotionally. You are concerned that I may hurt others feelings, but not concerned about the avoidance or abandonment from some that have hurt my or my dad's feelings. This is a real hardship that almost every dementia caregiver experiences but it gets swept under the rug out of fear of offending someone. People don't need to question- they've either been there or they haven't (I'm not sure why you'd question anyway if you've been one visiting, making meals, etc). My point is to help people recognize that they don't need to avoid the situation. Reach out, don't be afraid to pick up the phone or visit or ask how someone is doing. And honestly I say this just as much if not MORE for my dad; he has expressed the same sentiments. Cassandrahttps://www.blogger.com/profile/06151048661050906612noreply@blogger.comtag:blogger.com,1999:blog-3649118720488149471.post-43452205874304638492016-12-27T15:26:48.838-08:002016-12-27T15:26:48.838-08:00Perhaps the negative thoughts and assumptions shou...Perhaps the negative thoughts and assumptions should be left out of your comments. I sincerely hope you are grateful for whatever services people can render. Saying some haven't given as much as other leaves open the question "is she talking about me?". God will judge in the end, who stepped up. These thoughts posted here in you essay have a potential to hurt others feelings.Remember we do read these things and have to wonder, as did the faithful apostles of Christ asked, "is it I?" Michaelhttps://www.blogger.com/profile/15120227319078536460noreply@blogger.comtag:blogger.com,1999:blog-3649118720488149471.post-82440328532787051392016-12-21T12:39:40.226-08:002016-12-21T12:39:40.226-08:00Hi Cassandra. I have so many similar feelings and ...Hi Cassandra. I have so many similar feelings and experiences to yours though our situations are very different. When I had Natalie there were people who would literally look at me and then walk away because they didn't know what to say and a lot of people kept their distance because they didn't know how to act around me or her. Three years ago when she had her stroke and I began to need to care for her 24/7 the majority of people in my life besides my family basically dropped out, including some people from church whose job it was to keep tabs on us. I completely identify with your feelings of abandonment and sadness and loneliness. Like you said, it is so great when people ask questions even if they are a little reluctant to do so. I think that people sometimes avoid us because they cannot imagine facing the same type of situation and it scares them. I will say though that I am grateful to know what is true, which friends I can truly rely on and which ones just wish me well from afar. I've said before that it's sort of like being in a pool drowning and having your friends stand on the edge of the pool telling you they'll pray for you rather than jumping in to save you. It does seem harsh to say these things but it is the reality. Giving service isn't much when it is convenient or easy. I am grateful to have the perspective I have now although it has come at a great cost. Sending very much love to you and your entire family.Michelehttps://www.blogger.com/profile/16001435088582837732noreply@blogger.comtag:blogger.com,1999:blog-3649118720488149471.post-10991380384018528762016-12-21T11:44:24.429-08:002016-12-21T11:44:24.429-08:00I think your question to your husband is pretty lo...I think your question to your husband is pretty loaded. What would you want for yourself and your family? Putting this in writing in a health care proxy document is a kindness you can do now, so they needn't wonder. Whatever the caregiving role, it exists whether a person is placed or not, and taking the burden of guilty wondering is something you can address. Celiahttps://www.blogger.com/profile/07115179831713029884noreply@blogger.comtag:blogger.com,1999:blog-3649118720488149471.post-40216400402509269042016-12-21T11:20:16.590-08:002016-12-21T11:20:16.590-08:00My father-in-law (after he was a widower) got a la...My father-in-law (after he was a widower) got a lady friend. I took them both out to breakfast every Sunday for a couple years until he died. Then she and I went out for Sunday breakfast (lunch sometimes) for a couple years until she had to move in with her family. Then I would pick her up and we would go out until she could no longer go out, then I took donuts on Sunday morning and they would provide the coffee. She was many years older than I and her family told me that I was the only one to visit. All her old friends quit coming or calling. I went to her 90th birthday party and no one was sitting by her. I sat with her all evening, others would come for a minute then go back to others. I found it sad. She's gone now...I miss her. I've been thinking about her nephew and his wife who were her caregivers. Guess I'll go visit.Judyhttps://www.blogger.com/profile/14414361079501574872noreply@blogger.com