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 Relationship with children 
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Joined: Mon Jan 27, 2014 11:10 pm
Posts: 87
Location: Canada, Ontario
Post Relationship with children
We have had a week of very good behaviour. I couldn't believe how well things were going. Last evening my son phoned form Honolulu and we were talking for abour an hour. My husband was watching TV. My husband got very angry and insisted that I stop the conversation and hang up. My son said he better go and hung up. My husband has two children and I have two. My sons are both far away. His kids live one within 45 minutes and the other a 2 hour drive away. His son was here last weekend and he enjoyed the visit, but his daughter never calls and we have not seen her since August and she lives the closest. Later he apologized but in the interim he refused to eat his supper and was very nasty. He doesn't understand why he did what he did but I feel he is jealous of my relationship that I have with my sons. Has anyone else had a problem like this. Anne


Mon Feb 17, 2014 4:45 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Relationship with children
Quote:
My husband got very angry and insisted that I stop the conversation and hang up.


My husband always got angry when I talked with anyone else, either on the phone or in person. I was never sure why.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon Feb 17, 2014 6:05 pm
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Joined: Mon Jan 27, 2014 11:10 pm
Posts: 87
Location: Canada, Ontario
Post Re: Relationship with children
Thank you, Pat. It seems like jealousy to me. My husband was never a jealous man, but then, so many things have changed. I guess we never know what is coming next. Anne


Tue Feb 18, 2014 2:40 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3396
Location: Vermont
Post Re: Relationship with children
You know how little kids can be busily doing something, and as soon as mom gets on the phone they want attention or start acting out? I think it may be like that - our LO want us to focus attention solely on them, even when they appear to be doing something else. My dad got very selfish, self-absorbed, and wanted all the attention no matter what else was going on in his last months. Everything was about him, no one else's needs or lives mattered. This was actually one of the first behavior changes I noticed before I was ever told that he "possibly had Parkinson's". He was always a very kind person who gave so much to others and was not selfish at all. That completely changed about 2 or 3 years before he died. It was all about him, thus calling me several times per hour (or more) and demanding attention nearly drove us all crazy. It is a very difficult symptom to deal with. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Thu Mar 20, 2014 4:35 pm
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Joined: Mon Jan 27, 2014 11:10 pm
Posts: 87
Location: Canada, Ontario
Post Re: Relationship with children
Hi Lynn; Thank you for your reply. It seems that what you discribe is exactly what I am seeing with my Husband. He is wanting my attention 100% of the time no matter what he or I are doing. The phone problem is most annoying as it makes it hard to keep in touch with family and friends. He is quite vocal and loud and I am sure he can be heard by the callers. Some understand and some don't. Anne


Mon Mar 24, 2014 9:53 pm
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Joined: Sun Mar 30, 2014 7:09 pm
Posts: 1
Post Re: Relationship with children
I am 55 and my 62 year old husband was diagnosed w LBD & Parkinsonism 8 years ago. I have an older child from a previous marriage and my husband is so jealous of him. He will rant on him for a while, then forget that he did it. It is very hard to understand but I believe part of why he is so "possessive" of me (in part) is because he is scared of what is happening to him. I see a lot of fear in him.


Mon Mar 31, 2014 8:33 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3396
Location: Vermont
Post Re: Relationship with children
I hope for your son's sake that he is very familiar with this disease, so that he knows it's the disease talking and that his stepdad has no control over what is coming out of his mouth. It is hurtful, for sure, but understanding that the disease is causing him to talk this way should help de-personalize it. Big hugs to all of you. It is so hard to go through this. When my dad would fly into rages or talk really mean, I'd try to remind myself that it was the disease but I could only take a few hours of it at a time and if it continued I'd tell him I was leaving and I'd be back tomorrow. Then I'd leave the ALF where he was living at the time because I had to get away from it to recharge. Good luck. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Mar 31, 2014 9:30 am
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Joined: Fri Oct 19, 2012 11:25 am
Posts: 14
Post Re: Relationship with children
Am I the only one who's adult children have no clue what being a caregiver is like? (I care for 2! My husband with LBD and his father, 78 and wheelchair bound) They will still call and text me wanting to know if I can sew something for them, or get stains out of a shirt, etc. I love them and have always "enjoyed" doing these little things for them, (from time to time, not constantly). But now, there is hardly any time to even care for myself. As caregivers, do you feel that "every little thing" asked of you now feels like an insurmountable event? How do I tell them that I love them so much and I miss doing things like that, but, there is just no "free" time in this house anymore. I have hinted and just not done things. Don't know how to make them see that my life has changed so drastically?


Mon Jul 07, 2014 3:10 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3396
Location: Vermont
Post Re: Relationship with children
Terry - have you thought about asking your kids to fill in for you for even an hour or two sometime? If they did that, they'd have a whole different experience and view on what's happening. I know my kids didn't really understand how or why I was so stressed about taking care of my dad. I wasn't a day to day CG, since he lived 500 mi. away, but I was "commuting" there at least once a month, plus spending almost all my time when I was at my own house dealing with the VA, his medical insurance, drs., financial matters, and overseeing a large construction project at his house which had to be done before I could sell it to have $ to keep him at the ALF. It was exhausting and took up almost all of my time. I think that kids who are young and healthy and have never had to deal with serious illness in the family just don't get it. They don't have the experience to understand what is going on and the time and toll it takes on the CGs.

If there is a way you can have each of them be in charge, even for a small amount of time, it would reframe their thinking. Better yet, see if they can spend a whole day or a night and day as the primary CG. Also, would they read a simple explanation of LBD, what it is, what it does, how debilitating it is, so they can be educated about the horrible realities of this disease?

Do you have part time folks coming in to help you? It sounds like you can use some respite to maintain your own mental and physical health. Good luck, let us know how it's going. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Jul 07, 2014 8:37 am
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Joined: Sun Jun 08, 2014 11:24 am
Posts: 23
Location: Locust Grove, Ga
Post Re: Relationship with children
I don't think anyone can understand the extent of the care required. Out of sight out of mind. I find that even the senior adults I am associated with don't have a clue. Everyone is so busy with their own lives. But even if they weren't they really can't understand. The pressure comes from the constant needing. I also care for my 42 year old developmentally disabled son and a 15 year old son who is also disabled and confused about why dad is like he is. I feel like my life is not my own and no one appreciates anything I do. The adult kids don't have a clue. So frustrating and I feel sooooooo sorry for myself sometimes. Glad I have somewhere I can whine. So Terry, no you are not the only one who has adult children without a clue. I do agree that if you can get them to walk in your shoes for a bit it will give them a different perspective. That said "out of sight out of mind". They can forget because unlike us they can walk away. But it could change one who could in turn give you some added help as they realize what a toll it takes on you. Hang in there.

Debbie

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64 year old wife of Tom, 72, who was diagnosed LBD a year ago.


Mon Jul 07, 2014 10:04 am
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Joined: Fri Oct 19, 2012 11:25 am
Posts: 14
Post Re: Relationship with children
Thanks so much for your input! Yes, sounds like dubbye could use some help big time. I do have a family member who comes and stays so I can go out into the world and take care of the stupid stuff, post office, bank, shopping, prescriptions, auto maintenance, etc. I have been seeing a counselor for about 2 weeks now. Have some really good material. Already feeling better, just get more frustrated with those who "aren't ill" who think they have all the answers. They have read the material. So did I when he was first diagnosed. But, you are right, until you LIVE it, it's like buying a book on raising kids. You can read and educate yourself, but, until you have chased a houseful of kids, you don't have a clue. I feel sorry for myself once in a while, but, am doing much better. The material I have focuses on NOT being a victim! (However, I do feel like a casualty of war more often than not. LOL) I'm glad this forum is here for us to whine as well. Sometimes, it just helps to know you are not alone facing all of the weight! God bless and best of luck!!


Tue Jul 08, 2014 1:29 am
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