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 some advice please 
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post some advice please
Hello all, I haven't posted in a while as I have been very busy, and Dad has been stable - physically at least. He is still begging us to take him home when he is lucid enough to know where he is. It is still extremely difficult, but the care he is receiving is amazing, and he has improved physically, so that is the trade off to the emotional heartbreak.

I need your advice. I brought a visitor from England to see Dad last week and it devastated him. I honestly thought he would not even recognize him. He is a cousin of my mothers, and though Dad knew him before, I would not say that they were close. However, his visit impacted so negatively on Dad that I have a major concern. He cried for the whole week, his delusions and hallucinations were awful, and there was no consoling him. Even his wonderful carers were extremely upset. If there is a silver lining in this, it is that it highlighted how wonderful these people are that care for him every day. It was awful, and doubly stressful as I then had to go to my mother and tell her that he was fine and in good form. I never tell her about the bad days and gloss over them when I give my 'report', as she would be devastated. There is a family wedding on June 23rd, which several family members are coming from England for and want to visit Dad. He was extremely close to them and I am afraid that a visit from them will not be good for Dad. Do I allow them to call and see him or do I say no? They are all quite elderly themselves and I think that this will be their last visit. I know I have to think of Dad, but there is a doubt there that he may benefit from a visit from them. I really don't know what to do. Thanks for listening and any advice would be gratefully received.

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cared for Dad who passed away on January 28th 2013 R.I.P.


Sun Jun 10, 2012 8:31 am
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Joined: Fri Jan 13, 2012 11:51 am
Posts: 43
Post Re: some advice please
Ger,
Maybe you could create a schedule for visitors? Just 1 or 2 at a time for a short period, during his better times of the day.Have to most "important" ones first, and see how it goes. Explain to family members ahead of time your concerns that visits may upset your dad, and it may not work.


Sun Jun 10, 2012 9:19 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: some advice please
I agree---short visits, one or two at a time.

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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.


Sun Jun 10, 2012 10:14 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: some advice please
What a tough decision. Perhaps you could write a letter to all the relatives explaining what happened with the most recent visit, and say you are torn. Seek their input based upon this new info.

Glad to hear your dad is receiving wonderful care.


Sun Jun 10, 2012 10:54 am
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: some advice please
Thanks everyone. The visit in question onlly lasted 2 or 3 minutes. I don't think it had anything to do with the length of the visit, but more to do with reminding Dad of his inability to do anything for himself and of his situation. His visitor wasn't much younger than Dad, and is in much better health.

Dad had seemed in pretty good form before the visit, but it really upset him, and had him in hysterics. There were swallows dive-bombing him in bed, there were children screeching around him, and he wanted his bride (this was truly heart-breaking).
{ One of his wonderful carers cried just as hard as I did - such wonderful, wonderful people}. I don't want to do that to him again, but I also don't want to deny him the pleasure of seeing them either.

I have spoken to some of my relatives, and they are very understanding, and have said they will leave it up to me. I am just worried in case my not letting them see him could be unfair to him and to them, as sometimes when he has visitors, he loves it. It is one of those situations that 'you're are darned if you do, and darned if you don't'. Its another roll of the dice in this awful disease. Thanks again x

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cared for Dad who passed away on January 28th 2013 R.I.P.


Sun Jun 10, 2012 12:32 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: some advice please
wow tough decision for sure.. you have gotten some great ideas so for

another would be to ask the caregivers that you so like, at the facility.. i realize everyone is different, but they might have dealt with this before and could offer a few other suggestions.. i really like the idea of most important first fora very short time and see how it goes.. is it possible to ask your dad what upset him ?? and what he would like??
it might of been, he was actually coming to accept the reality of what is going on with him.. more than seeing the friends..

good luck ger.. i know what ever decision you make, will be the right one...
cindi

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sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Sun Jun 10, 2012 12:33 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: some advice please
Ger, after your dad's initial reaction to the visit, were there any lingering positive comments from him or memories of the visit--anything that might suggest the visit was worthwhile despite his initial response? I guess that's something I'd look at in considering whether to invite more visitors who might provoke the same response.

Sorry you and your dad have had to go through this,

Julianne


Sun Jun 10, 2012 12:40 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3305
Location: Vermont
Post Re: some advice please
This really is a tough situation Ger. Less than a week before my dad died my sister called some of his oldest friends, particularly ones who hadn't seen him in quite a while, and told them to visit him now if they could. He was not overly emotional with most of the ones who visited, but with one in particular he did cry and cry and cry while J was there. I think it was my dad realizing how ill he was and that he was at the end and that he and J had shared so much of life together. We were all crying.
However, it didn't set my dad in an emotional tailspin that lasted for days like your dad. I might try what was suggested earlier, to let 1 or 2 of the most important people from his past in for a min. or two and see how it goes. If he is very upset again, I think it's best to not let others in and explain to them why not. Obviously the most important thing is keeping your dad calm and it sounds like you're doing everything you can to do what's best for him. It really is a hard choice to make. Your posting brought me back to a very tough place. 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.


Sun Jun 10, 2012 12:42 pm
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Joined: Wed Sep 30, 2009 8:25 am
Posts: 227
Post Re: some advice please
We have very limited visits for my mother-in-law. After a visit she will cry and become deeply depressed. Only her daughters and sister visit. Her sister visits every couple of months (out of state) and her daughters once a year. She reacts the same way to phone calls. I also believe that this is because it a reminder of the way she used to be. Not an easy disease for anyone.

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Donna (age 56) caregiver for mother-in-law Margaret (age 88).


Sun Jun 10, 2012 2:20 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: some advice please
Ger, I am so glad your father has such a wonderful care team. That must be a comfort to you, at least.

Whatever decisions you make about visitors, know that you are doing your best, as you have done for your dad all along. Both of your parents are extremely fortunate to have such a loving, capable child.

It is the disease that is making this such an angonizing situation. It is your skill or lack of it to read a crystal ball. You may have some regrets and wonder if the other choice would have been better no matter what you do about visitors. Please don't beat yourself up. Do your best. That is all any of us can do.

I hope that you will be able to enjoy some of the wedding festivities yourself, and visit with relatives you do not get to see very often.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sun Jun 10, 2012 3:03 pm
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Joined: Tue Aug 24, 2010 1:45 pm
Posts: 35
Post Re: some advice please
Ger,
Instead of worrying about having people visit your dad, how about making a video for him at the wedding? Not so much about the festivities--if that would make him sad--but have each of his special friends or family member say a quick "Hello" and perhaps mention a "happy" memory they share. Encourage them not to go into how sad the situation is or how much they miss seeing him. But if they do, you can always edit that out. Then, you can show him the video on a good day and if it upsets him you can turn it off immediately or if he likes it you can show it often to remind him of happy times. If the folks complain about not getting to see him in person, just remind them your concern is what's best for your dad.
Just a thought.......................Kathy

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Kathy, 63, wife & caregiver of Tom, 64 dx 2007 (later stage) lives in dementia care facility in Durham,NC


Mon Jun 11, 2012 9:50 am
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: some advice please
Excellent idea Kathy. Thank you so much, and thanks to everyone for their wonderful advice. I thank God for finding this forum and having wonderful friends like you.
God Bless,
Ger xx

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cared for Dad who passed away on January 28th 2013 R.I.P.


Mon Jun 11, 2012 10:45 am
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: some advice please
Ger,

Sorry I've been gone for so long. The video at the wedding is a great idea. My nephew and his bride brought their wedding video to show to Mom last year and with a room full of family members, we made an event of the showing. Having the bride and groom there at the time was great for Mom. She kept looking at the video and pointing to the bride and then the groom (no words, remember) to indicate that she knew it was them. I think it meant a lot to Mom. All we needed was my laptop, the appropriate cable for PC to TV connection, and a quiet room with a TV in it.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Thu Jun 21, 2012 2:31 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: some advice please
thanks Kate, good to see you back. Was wondering where you were. hope all is well with you.
I decided to let my uncle visit with Dad for a few minutes, as I had discussed it with his nurse and she said that if he got too upset this time that we could give him an extra half seroquel to help him sleep and some xanax to relax him. She rightly said that it would be a pity not to give them the opportunity to visit with each other as this is most likely their last time to see each other. Well, I never closed an eye last night worrying about the visit, but lo and behold, all went well. Sure Dad got upset, and we did end up giving him the seroquel, but I think it was good for both of them. Dad wasn't nearly as upset as he was after his last visitor, and he is much closer to this uncle. You just never know, but I know I'm glad now that we let the visit go ahead. My mother was delighted to see her sister, and her 2 nieces also, so it was a good day all around.
I'm looking forward to the wedding now, had my fake tan done this evening (my nickname is milkbottles here :lol) and I plan to get my make-up done too, so I can't wait to dress up and have some fun.

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cared for Dad who passed away on January 28th 2013 R.I.P.


Thu Jun 21, 2012 4:42 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: some advice please
Ger,
I am kind of thinking less is better, I understand people want to see your Dad but if he is getting upset is it really worth it ?
Tough decisions for sure !

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Irene Selak


Thu Jun 21, 2012 5:08 pm
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