It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Alzheimer's Disease & Dementia Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 11-30-2006, 07:22 AM   #1
Junior Member
(female)
 
Join Date: Jul 2006
Location: England
Posts: 24
Suzy2 HB User
Suggestions please

Some of you may already know from my other thread that my sister has dementia but she is only in her fifties.

When I arrived to pick her up for the day yesterday my BIL(her full time carer)was obviously in a very stressed and upset mood. Although he does tend to complain alot in general about anything and everything,I sensed that everything that he was saying to me yesterday was "realy" how he was feeling. he said that he could not cope on his own with my sister anymore,that he has no life of his own,how he cant have a bath without her bothering him etc etc. I asked him what he feels should happen now to change the situation,he replied "I think that she should go into a home where there are people that can look after her 24/7"

I suggested that he speak to the nurse that visits every week about how he is feeling,or if he didnt feel that he could speak to her or anyone else, I offered to speak to someone on his behalf. But he refused and said it was a waste of time speaking with anyone.

When I returned with my sister in the evening, my Niece(who lives at home but isnt there much) said that my BIL had been crying earlier.

What do I do? My BIL has told me not to speak to the nurse about what he has said,so if I do I will be breaking a confidence. He wont speak to anyone either but he obviously isnt coping.

Any suggestions anyone?

 
Old 11-30-2006, 07:26 AM   #2
Senior Veteran
(female)
 
Martha H's Avatar
 
Join Date: Dec 2004
Location: Middlebury, IN
Posts: 4,695
Martha H HB UserMartha H HB UserMartha H HB UserMartha H HB UserMartha H HB UserMartha H HB UserMartha H HB UserMartha H HB UserMartha H HB UserMartha H HB UserMartha H HB User
Re: Suggestions please

Speak to the nurse. He is suffering from caregiver burnout. He needs a rest. Even if she only goes to a NH for a 'respite visit' for his sake, but likely she really ought to be there 24/7. We also felt guilty when Mom had to go, but it was necessary. He needs help. I was in a similar position and almost went mad.

love,

Martha

 
Sponsors Lightbulb
   
Old 11-30-2006, 07:41 AM   #3
Member
(female)
 
Join Date: Jun 2006
Posts: 95
Raffeer HB User
Re: Suggestions please

Please help your BIL find a residential facility for your sister. He has made a very difficult decision by accepting the fact that she needs to be in a place where she can get care 24/7. Speaking to the nurse who visits once a week does not really answer the situation. Your BIL has been living it and is the best one to decide when the time has come. He needs your active support in this.
Both of you, to say nothing of your sister, will be better able to cope with the situation when she is in professional hands.
I know I found myself making sarcastic comments and at times yelling at my husband. Fortunately I was able to find an Assisted Living Facility where he is getting good care and I can visit on a dailt basis. We are both far better off.

 
Old 11-30-2006, 12:52 PM   #4
Junior Member
(female)
 
Join Date: Jul 2006
Location: England
Posts: 24
Suzy2 HB User
Re: Suggestions please

Thankyou for the replies....Speaking to the nurse who visits once a week does not really answer the situation. Your BIL has been living it and is the best one to decide when the time has come. He needs your active support in this.



I am trying my best to be supportive. I could sit back and let them just get on with it all like I know they would do if it was me in their situation,but I dont,I realy am trying to do my best here.

my BIL doesnt have the money to send my sister to a privately run care home so as the nurse has asked for us to speak to her about any problems I presumed she would be able to help with suggestions as to respite or permanent care. Who do I speak to about this if not the nurse? I honestly dont know.

I called to ask my BIL one more time to reconsider speaking with someone about his situation because I believe that it has to be better coming from him rather than me. But like he does very often,he passed the phone straight over to my niece before I had a chance to speak to him properly.(I dont take that personaly because he does it alot with other people too) Anyway,my Niece agreed to speak with the nurse this afternoon and by chance she had just arrive at the house. She promised to call me later to let me know what was said.Well,she didnt call so I called her. She admited that she didnt say anything to the nurse and I believe it is because she is afraid of the reaction from my BIL as he can be very scary when he is angry.

She said she is going to definatly call someone tomorrow and tell them everything but I am not holding my breath.

I will leave it until tomorrow afternoon and then I am going to call the nurse. If my niece has not been intouch with her then I am going to tell the nurse everything myself.

 
Old 11-30-2006, 01:44 PM   #5
Junior Member
(female)
 
Join Date: Nov 2006
Posts: 32
Mom2Mom HB User
Re: Suggestions please

What about Medicaid to help cover the cost?

My Dad came to me one day and said he just couldn't take it anymore and we made the difficult decision to put my mom in to assisted living. I really think that caring for her was killing him!!! He lost weight, was depressed, pale... He needed a break, a chance to get on with his life (sort of)... Do what you can to be there to support your BIL and Niece. Good luck to you all.

 
Old 11-30-2006, 01:50 PM   #6
Veteran
(female)
 
Join Date: Oct 2003
Location: USA
Posts: 446
Beginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB User
Re: Suggestions please

Your postings break my heart, because I see myself in your family's situation (including the financial worries when it's going to be time to put my husband in a facility). There's no way to avoid the fact that this is a terminal degenerative disease and that a patient will eventually need full-time care. It is probable that she is eligible for Social Security disability benefits, even if she is not at retirement age. If she is eligible for SS disability, then she will be eligible for Medicare too (and possibly even welfare). It is true that whatever family assets they have will need to be used for her care. (Ultimately, your BIL will probably find that freedom from being a 24-hour caregiver and knowing that she is in a safe place is worth whatever assets he has, although in most states he will still be able to keep his house, a car, etc.).

Your BIL and Niece need to have a geriatric social worker work with them who is knowledgable about these benefits. Asking the nurse for help will be a good start. Whether it happens now or in six months, their family is at the point where they have to be more proactive. Her doctor may also point them to resources to learn about the final stages of AD caregiving and support. Some communities have geriatric or senior citizens' centers, who also have expertise and will know where to point them for more help.

You need to let him know that he's been a great caregiver (?!) and that no one will think any less of him for using these resources. In fact, the family respects (?!) the fact that he has tried to do everything for her for so long, even past the time when most men would have called for help...you know the speech, even if it may stick in your throat at times. He won't come around immediately, but as her behaviors deteriorate the family won't have much choice. And the stress of caregiving might eventually wear him down to the point that he will have his own health problems, which would put an even greater burden on your niece.

Last edited by Beginning; 11-30-2006 at 01:51 PM.

 
Old 11-30-2006, 03:37 PM   #7
Junior Member
(female)
 
Join Date: Jul 2006
Location: England
Posts: 24
Suzy2 HB User
Re: Suggestions please

To beginning.

Thankyou so much for your reply.You realy seem to understand how I am feeling about the whole situation.

Your postings break my heart, because I see myself in your family's situation (including the financial worries when it's going to be time to put my husband in a facility). There's no way to avoid the fact that this is a terminal degenerative disease and that a patient will eventually need full-time care.

I am so sorry that your husband has this illness and that you are having to cope with financial worrys too. it just isnt fare is it? Dementia realy is an evil illness!

It is probable that she is eligible for Social Security disability benefits, even if she is not at retirement age. If she is eligible for SS disability, then she will be eligible for Medicare too (and possibly even welfare). It is true that whatever family assets they have will need to be used for her care. (Ultimately, your BIL will probably find that freedom from being a 24-hour caregiver and knowing that she is in a safe place is worth whatever assets he has, although in most states he will still be able to keep his house, a car, etc.).</

We live in England so my sister does get her medications and visits from the nurse or to see the Doctor, for free on the NHS. Also my BIL claims carers allowance. But I think if my Sister was to go into a care home then my BIL would have to sell the house to help pay for it. Infact I dont know where he would stand with the selling of the house because years ago I told my BIL that he realy needed to start sorting out power of Attorney(SP) because the house is in both of their names. But he didnt do anything about it so now of course it makes everything so much more complicated.

Your BIL and Niece need to have a geriatric social worker work with them who is knowledgable about these benefits.

I think this is somthing that they have had help with. I understand that it was the help and advice of someone like you mentioned that helped my BIL to be able to claim the carers allowance. I believe that there are other things that he could claim for but he hasnt done it. For example about 3 years ago my sister was told that she needed glasses,my niece said that before they got them they were going to sort out how to get them for free because aparently that is somthing else that could be claimed for. But even though I asked over and over again what was happening about the glasses my niece would tell me "oh I havent sorted it out" This is where I get frustrated because certain things I cant do for the family,they have to do it for themselves.

Asking the nurse for help will be a good start. Whether it happens now or in six months, their family is at the point where they have to be more proactive. Her doctor may also point them to resources to learn about the final stages of AD caregiving and support. Some communities have geriatric or senior citizens' centers, who also have expertise and will know where to point them for more help.</





Yes you are right,they do need to be more proactive. I know that I must sound like a right old moaner, but again I feel like there are things they could do to make things so much easier on themselves but they dont do it. There was a meeting the other week for carers of people with Alzheimers where there was going to be a short talk and time to share experiances and tips on careing. My BIL refused to go as he does with Doctors apointments too. So I went along instead because I was interested to learn how to communicate better with my sister amongst other things. I came home with information on "helping to dress","communicating " agressive behaviour" and some other info that I thought would benefit not just myself but especialy my BIL. He wasnt interested, he said that I "Look to deep into things and worry about it all too much"



You need to let him know that he's been a great caregiver (?!) and that no one will think any less of him for using these resources. In fact, the family respects (?!) the fact that he has tried to do everything for her for so long, even past the time when most men would have called for help...you know the speech, even if it may stick in your throat at times. He won't come around immediately, but as her behaviors deteriorate the family won't have much choice. And the stress of caregiving might eventually wear him down to the point that he will have his own health problems, which would put an even greater burden on your niece.

I realy had to smile at what you said here because like I said at the beginning of my post "You realy seem to understand the situation"

As for my BIL's health. Well he doesnt look well at all to be honest. He is very thin,plus my niece told me that he has coughed up blood a few times over the last few months and is often sick in the mornings. This might sound harsh but if he didnt drink at least 2 bottles of cider on most days then he wouldnt be as unwell as he is. But again,"what can I do about that?" nothing,any change has to come from him.

Thankyou again for your reply and to everyone else that replied to,I do apreciate it.

 
Old 11-30-2006, 11:53 PM   #8
Senior Veteran
(female)
 
Join Date: Jun 2005
Location: Texas
Posts: 1,439
WannaBeFreeToRoam HB UserWannaBeFreeToRoam HB UserWannaBeFreeToRoam HB User
Re: Suggestions please

Hi Suzy2,

Just have to jump in here and give my nickles worth of advice or things to think on.

I do not think you should talk to the visiting nurse. It is like it is here, if your sister goes to a nh, that nurse would be partially out of a job. So, she is not the one to go to for advice. Like someone else said, you need a social worker to advise you and your BIL and Niece.

The Social Worker that comes to my parents house, has given me and my sister, lots of good advice and alz places to visit. She knows, because social workers can go to nh and such to help people, also.

Also, start just dropping in to nh/Alz places in yalls area, and just do not tell anyone else. So, far I have visited 5 - 6 places. The last one, that was one of the 2 suggested by the Social Worker, seems like the best. Not too far from their friends and church.

Good Luck with your search. I know that your BIL will not give up yet, but you need to be ready, when he has had it. That is what I am waiting on with my Mother, my dads partial caregiver. I help and when my sister is in town, she helps also.

Love, Wannabe

 
Old 05-06-2007, 06:28 AM   #9
Senior Member
(male)
 
Join Date: Jun 2005
Location: Bremen, GA
Posts: 108
Laner HB User
Re: Suggestions please

Your BIL is at the end of his rope. Get him some rest before he loses it. He needs regular time away and right now probably a week or two. Then every other weekend, plus a few nights during the week. It is very stressful taking care of someone like this. Don't think of his complaining as complaining but think of it as reaching out for help. As a man I know he probably won't come right out and ask.....give him the much deserved help he so desporately needs.
Good Luck!
Laner

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
URGENT-Need suggestions please LuvMyLilDoggie Relationship Health 11 10-29-2007 08:13 PM
Could this be anxiety...or any other suggestions please!! davo7 Anxiety 6 06-10-2007 08:34 AM
Failed Lumbar Fusion - Suggestions please?!?!?! Cyborg2277 Back Problems 6 11-06-2006 07:41 AM
Suggestions Welcome, PLEASE! ClarkieDude Back Problems 7 07-18-2006 03:55 AM
Neck problem. My story. Any words of wisdom, suggestions? jake90810 Back Problems 1 10-27-2004 02:31 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added




Top 10 Drugs Discussed on this Board.
(Go to DrugTalk.com for complete list)
Aricept
Aspirin
Ativan
Morphine
Namenda
  Reminyl
Risperdal Seroquel
Xanax
Zoloft




TOP THANKED CONTRIBUTORS



Gabriel (758), ninamarc (157), Martha H (124), meg1230 (93), angel_bear (68), jagsmu (55), Beginning (51), TC08 (44), ibake&pray (43), debbie g (37)

Site Wide Totals

teteri66 (1180), MSJayhawk (1006), Apollo123 (906), Titchou (850), janewhite1 (823), Gabriel (759), ladybud (755), midwest1 (669), sammy64 (668), BlueSkies14 (607)



All times are GMT -7. The time now is 11:01 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!