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Needed respite How do you know when it is time for one?
Internal Administrator
Posted: Tuesday, January 17, 2012 3:33 PM
Joined: 1/14/2015
Posts: 40463


Originally posted by: Linda G2

My dear fellow spouses, The hospice program my DH is in provides 5 nights of respite every few months so I can take off. Hubby goes to an inpatient unit, generally the same one.

My last respite was to get some outpatient orthopedic foot surgery taken care. Hardly a rest!..So, I have trip planned this week to an affordable spa in CA for pampering and mudbaths.

This morning I was told that there may not be a bed for hubby in his favorite facility. Normally I would be willing to rearrange my plans to accomodate HIs needs. This morning I thought, just place him somewhere, I don't care which one, I need to take my trip Red Face

Wow, I sure surprised myself. Why put myself first??? Eeker I am either really really tired and/or finally learning to put my priorities in order.

Turns out they did have a bed..Some of the staff commented on how tired I looked. My advice is to not wait until you get to where I was just a few hours ago.

By the way, I had made up my mind I would not change my plans unless there was no alternative.
Anonymous
Posted: Tuesday, January 17, 2012 3:33 PM
Originally posted by: meeko11

quote:
Needed respite How do you know when it is time for one?

Linda-the time is the day before you ask the question. If caregivers get too tired to function who else is there?
Anonymous
Posted: Tuesday, January 17, 2012 3:33 PM
Originally posted by: durantsdaughter

Linda,

You have been a patient and caring caregiver. YOU need some YOU time! And rest that foot! Enjoy your spa trip!
Anonymous
Posted: Tuesday, January 17, 2012 3:33 PM
Originally posted by: Cathy J. M.

quote:
Originally posted by Roger G. care partner:
Cathy,

Some people with Ad can not relate well with others.........Why put her throught that misery and anger.........and then the caretaker leaves she is riled and very loud. Does not do her any good.

Phyllis and Roger


A skillful caregiver might be able to connect with her -- or a skillful caregiver with the right personality vibes. I've never heard that there are some AD patients who just can't relate to anyone. I find that difficult to believe. I've read a lot of convincing accounts of successful approaches and connections with "impossible" AD patients.
Anonymous
Posted: Tuesday, January 17, 2012 3:33 PM
Originally posted by: Cathy J. M.

quote:
Originally posted by Sam~TX:
Cathy,

Apparently you have not been introduced to rages. Violent, aggressive rages. I have. Not something I want to experience again. And, NONE of the meds for them work for my sweetheart. In fact, they do exactly the opposite. YEs, it could be MUCH worse!

Sam


Yes, unfortunately I've had experience with violent, aggressive rages. I posted about my calling 911 on the regular caregivers forum, and my partner was in a neuropsych unit back in December. She was furious and violent for part of the time while she was there.

I'm sure your wife must have a geriatric psychiatrist if she has violent rages. What does he or she suggest? Has she ever been in a geriatric psychiatric unit?

I'm just saying -- don't give up.
Anonymous
Posted: Tuesday, January 17, 2012 3:33 PM
Originally posted by: Cathy J. M.

Some interviews, huh! Smiler

But if she says NO and NOT and yells all day anyway, it's hard to see how it could be worse if she had a caregiver come in to give you some breaks.
Anonymous
Posted: Tuesday, January 17, 2012 3:33 PM
Originally posted by: Cathy J. M.

quote:
Originally posted by Sam~TX:
I've tried to bring in someone and she went ballistic while I was interviewing them.
Sam


Sam, if she's alert enough to go ballistic during the interviews -- maybe she's alert enough to do the interviews with you? There are other ways to bring in paid caregivers, too -- lots of advice on other threads.

If you need more help -- I wouldn't put it off or tell yourself you have no choice. Find a way -- because if you get too tired, you can't do the caregiving well -- and if you get even more tired, your own health may suffer. If something happens to you, then who will care for your LO?
Anonymous
Posted: Tuesday, January 17, 2012 3:33 PM
Originally posted by: Roger G. care partner

Cathy,

Some people with Ad can not relate well with others.........Why put her throught that misery and anger.........and then the caretaker leaves she is riled and very loud. Does not do her any good.

Phyllis and Roger
Anonymous
Posted: Tuesday, January 17, 2012 3:33 PM
Originally posted by: Rkg

quote:
Originally posted by Roger G. care partner:
Sam, I guess Cathy just does not understand your situation. Everyone is different and what works for one might not necessarily work for another.

Phyllis and Roger



Roger, I think Cathy is just trying to help and give suggestions as we all do. She has dealt with rages so she does understand. Even me, who has a mild manner AD spouse understands that some have don't have it so easy. But no matter what even if I gave a suggestion it would be because I was trying to help, As Cathy is. Hopefully Sam will find what works for his DW to be comfortable with help from an outsider.
Anonymous
Posted: Tuesday, January 17, 2012 3:33 PM
Originally posted by: Starling

I'm another person who called 911. There was one violent episode very early on, and the nice policeman scared the living daylights out of my husband. And then both he and the ADA called me about two weeks later, which, because it was early on, reinforced the situation.

I decided if there was ever a second violent episode my husband was going to the hospital for medication adjustments. The Alzheimer's Association hotline told me to dial 911 and ask for someone to come to take him to the hospital if it ever happened again.

If you are dealing with rages all day long, even once in a while, your LO needs to go to the hospital, before it kills YOU. If you can't leave her, even for a short time, in the hands of someone who should be qualified to take care of her, without her retaliating, it is going to kill YOU.

You need to decide now if you are going to survive this disease, and who will take care of your LO after you are gone.
Anonymous
Posted: Tuesday, January 17, 2012 3:33 PM
Originally posted by: Rkg

Linda, Oh enjoy yourself! Relax and soak it all in.

I actually got my first respite (unless you count the grocery store) since Oct, today for 5 hours. It was wonderful! I know I need more, and am trying to get more. But unfortunately because of my Dh's age he doesn't fit into the daycare situation, so I am stuck. But he's become comfortable with a friend of mine being around, so I am gonna start at least getting a few hours here and there. Again, have a wonderful time!
Anonymous
Posted: Tuesday, January 17, 2012 3:33 PM
Originally posted by: Roger G. care partner

Rkg,

I know what you are saying but no one is really reading what Sam is saying. He has been there done that and it does not work for him. He was not searching for answers but responding to the original thread which is how do u know when it is time for respite. I guess sometimes after hearing the same time again and again we react negatively when after the first response that person keeps on keeping about the subject.

Phyllis and Roger
Anonymous
Posted: Tuesday, January 17, 2012 3:33 PM
Originally posted by: Roger G. care partner

Sam, I guess Cathy just does not understand your situation. Everyone is different and what works for one might not necessarily work for another.

I have found that the solution by most psychiatrists just want to drug the Ad patient. That way they are not able to be violent. Drugged into a sleeping mode. Really works well......but I am like Sam. Drugged and in a partial drug induced coma is not the answer. At least not for our loved ones.

Phyllis and Roger
Anonymous
Posted: Tuesday, January 17, 2012 3:33 PM
Originally posted by: Linda G2

Sam, I am reading this thread sitting om the plane on my way home for my respite. I feel so blessed my DH is still compliant and gentle. My heart goes out to each of you dealing with these issues. I guess my only question is the nuero an AD specialist.

I am not sure I could do what you are doing in such a devoted and caring way, Sam.
Please take care of yourself even if it is in just micro-respites.
Be gentle with yourself
Anonymous
Posted: Tuesday, January 17, 2012 3:33 PM
Originally posted by: Roger G. care partner

Linda G2,

I guess my only question is????????
Why does everyone have to keep questioning Sams decisions?

We all have very hard decisions to make. If a person makes a statement. Well then leave it at that. If they ask a questions, answer it.

Am I missing something here>

Phyllis and Roger
Anonymous
Posted: Tuesday, January 17, 2012 3:33 PM
Originally posted by: arm

I am trying to get our 24 year old daughter, who moved home to finish her Master's program, to take a respite. It is hard for her to be here day in and day out after living on her own at college and with a job for 4 years. She is getting married in December 2010 and wants to save money. She does support herself while living here. It is great that she is here, because I can run errands and she stays so her dad will not drive off somewhere. Sometimes she and I go out together when her dad is at his moms. She does go out with her fiance, but it is hard for her to see her dad this way. When she was growing up she was a daddy's girl.

She is looking for a new job in the field she received her Masters in. She needs to take a break and be 24. Her sister is on an internship in Washington D.C., and I am trying to get her to go visit for a weekend. They would have a great time I know. They both feel guilty about going on with their lives. I tell them all the time, that they need to do what they need to do for their future. I know that if I ask anything of them that they will do it. But right now I am fine with things. It will be bad enough down the road.

I see her getting depressed, so I know it is time for her to have a mini-vacation.
Anonymous
Posted: Tuesday, January 17, 2012 3:33 PM
Originally posted by: Summer_3

What you are missing is simply the fact that Cathy was trying to say she HAS been there.. If you had read her story back in Dec, you would know she has been where Sam is.

Plus, IMHO, I don't think you should EVER stop trying to improve your ADLOs quality of life. If she is that upset all day long, wouldn't it be worth "one more try" to see if something can be done to make HER quality of life better.

Additionally, dealing with rages is VERY hard on the caregiver as well, and for their own health and sanity, respite is a MUST. This disease, and the stress it causes, can be fatal to the caregiver as well.
Anonymous
Posted: Tuesday, January 17, 2012 3:33 PM
Originally posted by: Starling

jm29, I want to tell you just how much I admire your decision to help BOTH of your daughters to go on with their lives. One of the problems that caregivers of all kinds have with this disease is that it is NOT like a terminal cancer diagnosis. You CAN'T put your life on hold with this disease.

I'm sure that cancer caregivers have as much pain and suffering as dementia caregivers, but it doesn't go on for years or decades. The children of a cancer patient can hold off on their lives for the few months or year or two while their LO is dying. The children of a dementia patient can't do that.

Good for you for understanding both the guilt your daughters feel, and helping them get beyond that so that this disease doesn't kill them too.
Anonymous
Posted: Tuesday, January 17, 2012 3:33 PM
Originally posted by: Rkg

quote:
Originally posted by Sam~TX:
Oh dear. Seems like I may have inadvertently opened a can of unsavory worms. Let me make ONE more post, and then I'll drop it. HOpefully I'll make it clear enough that even a "blonde" can understand.




Wow, I think even this stupid red head got it!



Sam and Roger,
I understand that Sam was not asking a question and was only interjecting his suggestions, but members here (some whom have been thru difficult times with their LO's) cared enough to try and help with suggestion that they may or may not have found to work. To act like "we don't get it" is making it out like your caregiving journey is far worse than another caregivers journey. I don't think you/we can judge that, and though we may not agree with someones advice/suggestion we all have to be here. "Simplifying" for anyone is just plain rude. You know I use to think you guys were great guys cause you are taking care of your DW's, cause as I said on another post, I don't think my Dh could do it. But I am beginning to think that you have a very low opinion of women cause they just don't get it! Amazing!
Anonymous
Posted: Tuesday, January 17, 2012 3:33 PM
Originally posted by: Summer_3

no, i DO get it, but it is a difference of opinion.. of which everyone is entitled. Just because people don't agree, doesn't mean that others don't "get it".... but, I am of the mind that no matter what you have tried, there is ALWAYS another option. And, FOR ME ONLY, I would always try just ONE MORE THING to see if that made a difference
Anonymous
Posted: Tuesday, January 17, 2012 3:33 PM
Originally posted by: meeko11

Thank you Rkg. This forum is not about who has it worse. I would hope it is a warm caring place to come for comfort. Our situations and back grounds are all different. Dementia may be the commonality but our reactions are what they are. No right and no wrong.
Anonymous
Posted: Tuesday, January 17, 2012 3:33 PM
Originally posted by: Roger G. care partner

I quite......no one gets it.....
Anonymous
Posted: Tuesday, January 17, 2012 3:33 PM
Originally posted by: JAB

Hi, Hanging. A while back, divvi posted a link to a detailed list of hospice intake criteria, for patients who may have a variety of different disorders.

http://www.gracehospice.com/admissioncriteria.htm

Keep in mind that different hospice organizations have different criteria and/or interpret symptoms in different ways ... but this list gives a good idea of some of the things they may look for when determining eligibility.
Anonymous
Posted: Tuesday, January 17, 2012 3:33 PM
Originally posted by: Hanging in there!

What is the defintion of hospice in terms of alz/dementia? Does it only refer to final stage? Also I am trying to figure out how to have a couple day respite sometime this year from work and home. Last fall I tried to take my husband with me for a couple of days to a cabin I rented and realized I just can't take him to an unfamiliar location. His confusion gets way too high. Turned out it would have been less stressful to stay home.
Anonymous
Posted: Tuesday, January 17, 2012 3:33 PM
Originally posted by: Roger G. care partner

Big Grin
Something I just read. Might get me shot but I guess it fits.

A woman has the last work in any argument.

Anything a mans say after that is the beginning of a new argument.

The stress of this disease causes reactions that might not normally be said or done.

Guess it all goes to patience and understanding.
Both of which I seem to lose at times.
Anonymous
Posted: Tuesday, January 17, 2012 3:33 PM
Originally posted by: Rkg

Your Welcome Meeko!
Anonymous
Posted: Tuesday, January 17, 2012 3:33 PM
Originally posted by: meeko11

Roger-go stand in the corner Razzer
Anonymous
Posted: Tuesday, January 17, 2012 3:33 PM
Originally posted by: Rkg

I guess I didn't know that this post was about arguments? hmmmmm, I thought this was suppose to be about helping other caregivers along this journey. Not how to demoralize people, not how to get one up on people. I guess I need a glass of wine. Wink
Anonymous
Posted: Tuesday, January 17, 2012 3:33 PM
Originally posted by: meeko11

If it's Shiraz I may join you Big Grin
Anonymous
Posted: Tuesday, January 17, 2012 3:33 PM
Originally posted by: JAB

LOL!!! Geez, Roger, I thought everybody knew that.

(If you go stand in a corner, you're very likely to find me there. Meeko and friends have sent me there so often, I now usually just send myself and save them the trouble. We could trade recipes and share a bottle of wine to pass the time.)
Anonymous
Posted: Tuesday, January 17, 2012 3:33 PM
Originally posted by: Linda G2

Roger C, I am in no way questioning Sam's decision. My comment was to provide my admiration to him for doing what he is doing. Not all of us are ABLE to do that.
quote:
Originally posted by Roger G. care partner:
Linda G2,

I guess my only question is????????
Why does everyone have to keep questioning Sams decisions?

We all have very hard decisions to make. If a person makes a statement. Well then leave it at that. If they ask a questions, answer it.

Am I missing something here>

Phyllis and Roger

Anonymous
Posted: Tuesday, January 17, 2012 3:33 PM
Originally posted by: meeko11

JeanAnn it is a terrible suggestion-but I was in your situation. I also had to pay for a one on one aide to stay with my husband. He had to be chemically sedated until he calmed down. After that his meds were reduced but by then any active mental function was gone.
Anonymous
Posted: Tuesday, January 17, 2012 3:33 PM
Originally posted by: Iris L.

quote:
Originally posted by JeanAnn:
Hello. I am new to this discussion. However I do have a situation that maybe someone can help me with. I had been caring for my ex-husband for the last 5 yrs. who is 54 yrs. old. In Aug. 09 I had to make the decision to place him in a nursing home, where he stayed for approx. 1 month, then was moved to the behavioral unit at our local hospital. He was aggressive in this unit so after about 6 wks. he was moved to a mental hospital in Rusk, TX. where he is now. They tell me there is nothing else they can do for him, he needs to go to a nursing home. His social worker and myself have contacted over 80 nursing homes and none will take him due to his age, his aggression, his mobility, etc. He has to have one on one at this time. He does not talk, can not bath himself, etc. He walks constantly looking at the floor. I do understand the nursing homes position and responsibilty to the elderly patients. Does anyone have any suggestions?


Hello, JeanAnne. You might look for the posts of durantsdaughter. She had to call 911 to admit her EOAD husband because of his aggression. I can't remember his whole story but he is in a nursing home now. She posts a few times on the Caregiver board but she visits the chat room most evenings.

Iris L.
Anonymous
Posted: Tuesday, January 17, 2012 3:33 PM
Originally posted by: Roger G. care partner

JeanAnn,

I do not have an answer. But try and put this post on the Caregivers Forum as more people will see it an hopefully someone can give you an answer.
Anonymous
Posted: Tuesday, January 17, 2012 3:33 PM
Originally posted by: Rkg

quote:
Originally posted by JeanAnn:
I do understand the nursing homes position and responsibilty to the elderly patients. Does anyone have any suggestions?


JeanAnn, first let me say Welcome. The answer to your question is one that many EOAD caregivers worry about. Due to the fact that our LO's (your Ex) is younger. We face the sad truth that the medical profession, the agency's, etc still are not on board with the fact that yes, someone so young can wander in limbo. I am sorry I don't have an answer, just wanted to say that I too worry about what if my Dh gets to where your ex is now. Unfortunately I don't know if there are true answers. But only guesses of what to suggest. Hopefully one of them will work for your situation. Again, Welcome.
 
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