Huntington Disease Lighthouse Families

For HD families ... by HD families

When to go into the nursing home????? How do you know???

Posted by batesm 
Re: When to go into the nursing home????? How do you know???
August 20, 2007 03:54PM
My husband's decision to place his Mother in a NH was very difficult. She wasn't agreeable 5 years ago and isn't too much happier about it now. Our home is her preference, but there were multiple reasons that it was no longer a possibility.....not the least of which were stairs which became a big hazzard.

It helped that her visit to the COE confirmed that she needed 24 hr. care and a visit from a social made the same recommendation. It seems like even with objective people's perspectives, it is a very difficult decision to make for someone you love. I love the thought of taking a survey, but sure enough it would leave some people feeling as though placement would be premature when in reality it's overdue. The opposite would probably be true too.

It sounds like to me that people often consider the major emergencies justification for placement, when maybe there are also other considerations that make it just as resonable and responsible a decision. Having input from family, friends and other objective people is valuable, but it is a difficult emotional decision no matter how you arrive at it.

This is definitely one of the biggest and hardest decsions that has to be made for our pHDs. My best to those of you who are in this place of decision.
Re: When to go into the nursing home????? How do you know???
August 20, 2007 04:07PM
Yes I have and she does not qualify for medicaid. SHe will qualify once she needs NH care but currently medicare pays for almost everything she needs.
Re: When to go into the nursing home????? How do you know???
August 21, 2007 02:08PM
I would just like to refer anyone reading this thread that the New England HDSA Chapter has an excellent article available on this topic. You can read or print out the entire document here:

Choosing an American Nursing Home for Families Touched by Huntington?s Disease
By Francis J. Gilooley, Jr.

Excerpts - Preparing: Knowing When

People who care for their person with HD at home wonder, worry and pray that they will know "when it?s time" to give the care for their family member over to a nursing home. That is, that point in time when they can be sure that they?ve made every effort to provide care in their home and that, everyone and all things considered, these many complex nursing needs can better met by round-the-clock professional caregivers.

However, another difficult aspect of this process is that there is no sure-fire way to tell "when it?s time." There are as many different stories of how families came to know that "it was time" as there are people with HD in nursing homes!

Many times unforeseen events make it the right time. It might be a change in your health, a rapid change in his condition, the unexpected departure of someone who was helping you, the physical demands this type of care puts on you, sheer exhaustion, children in the home or some other reason beyond your control.

For all the sleepless nights wondering "when," the time may come suddenly and unexpectedly. Hopefully, this may make your decision an easier one and assure you that it was the right time to do it.

HD has many aspects and any one of them may signal "when."

There are the physical changes that impair walking, eating, swallowing and speaking.

Changes in mood may bring depression and problems with sleep, appetite and energy.

And, in some cases, the changes in thinking may present behavior that you cannot manage or tolerate in your home.

These events, often unanticipated, can range from a choking episode to significant weight loss, from falling down a flight of stairs to outbursts or rage; from cigarette burns to frightening the children.

It?s impossible to accurately predict the hastening circumstances.

Some folks with HD need hospitalization to treat psychiatric or behavioral problems. This may hasten your decision to seek long-term professional care for him but shorten the amount of time you have to find it.
Re: When to go into the nursing home????? How do you know???
August 22, 2007 01:59AM
Hi all
I think everyone here knows how I feel about this subject.
I do not say "them, those, they, or any such when refering to a loved one or anyone else with HD for that matter. Do unto me as I would do unto you (respect). I will never leave nor forsake the, you loved me then and I will love you now without question, better or worse, sickness and health, I will never leave your side, when you look up will see me smiling back at you...................that is what I would want and that is what I will give ...she '''"they"'' deserve that at the very least. Her mind still remembers and thinks but it just has a little problem controlling her body and her attitude these days, but she still has feelings and I will never hurt them by removing her from her comfort zone and putting her in a room full of total strangers for the rest of her's just not the way I was brought up. I will not fault a person that is physically unable to care for another but to do it due to reasons of other than that shows a flaw, (just my opinion) I hope I haven't hurt anyones feelings.

your friend
Re: When to go into the nursing home????? How do you know???
August 22, 2007 10:42AM

I understand what you are saying. I grew up in the country and around the same philosophy.

I think people generally agree with you. But, caregivers have only so much emotional and physical strength. Most people, who do place someone in a home, have no more strength to give or are so stressed out that the person is better off where they can get better care. And if the caregiver breaks, everything goes down the tubes. The difficult part is to know when you have reached that point.

I know of situations in which the caregiver is so stressed that the caregiver is also major distressed and is borderline abusive. Sometimes the pHD is abusive. Sometimes, something's gotta give.
Re: When to go into the nursing home????? How do you know???
August 22, 2007 11:19AM
And not everyone has the luxury of being able to spend time caring for one person. Or the financial ability. Or the skill and temprament.

In this case there are children that need rearing and a job that needs taken care of also. Each facet is equally important.

If someone has the ability do it Stevie Ray without sacraficing everything else, then their situation is very very rare.
Re: When to go into the nursing home????? How do you know???
August 22, 2007 02:59PM
In the year 2006 , 700 million people were over the age of 60 . Many of us may need nursing care in the future or we may need to help with home care of our mate or they may have to take care of us in the home . But , there are times when nursing care in long-term care facilities becomes necessary . It is each family that needs to have a family get together and talk about this . Is it possiable to keep those you love home a little longer or have circumstances changed and it is no longer possiable . All of us should make special effort to care for our own . But , surely there are circumstances in which that may not be possible . It may be necessary for all to work at a secular job , outside the home . All the penny pinching in the world , may not , make it possible for all to not have to work outside the home .And when one of the parents stay home and takes care of the children , their emotions and needs , might dictate that they require more time spent with them . Having a family member stay in the home as long as possible does help children to see , that sacrifices , sometimes are necessary to care for those we love . But , if the child needs extra care and it no longer becomes possible to take care of the family , adequetly , then , responsible placement in long term supervised care is something a person might want to consider . A person may need far more care than we can give . If that becomes so , then being active in oversight of the long term care facility and the needs of the love one we have there , becomes paramount . Daily visits , or every other day visits might be possible . Active interest in the loved one in the nursing facility will help ensure good care . I believe in the golden rule . Care for others the way you want to be cared for . And sometimes that care is in the best long term care facility possible ; with you and the whole family involved , out of love not duty . db
Re: When to go into the nursing home????? How do you know???
August 22, 2007 03:50PM
I think sometimes, and i'm just saying sometimes, the best intentions in the world can go too far, many times without us realizing it. Sometimes a caregiver is so focused on keeping their loved one at home, but many times their loved reaches a point where the caregiver is no longer able to give the best care possible any more, and sometimes it is very very hard for a caregiver to see this. I think sometimes it takes a caring heart to be able to say, i've done the best i can, and am giving you all i have, but you're not getting the best care you deserve. Many times a loved one needs 24 hour care, by a whole staff of people, and then, the caregiver is no longer stressed and at the end of their emotional resources, so they can now spend quality time with their loved one. Sometimes a caregiver giving up the reins, and saying, i need more help, is the greatest act of love they can do, even though it is hard, it is a true act of love too.

Edited 2 time(s). Last edit at 08/22/2007 04:26PM by Barb.
Anonymous User
Re: When to go into the nursing home????? How do you know???
August 22, 2007 05:35PM
Each situation is unique, of course - just as each relationship is unique.
Re: When to go into the nursing home????? How do you know???
August 24, 2007 06:20AM
Either way you go it will be a rough road. As you get near the end the choices get harder. As I mentioned my Mom is in a nursing home and I have been rather sad about it since she had to go. For some reason her being in Assisted Living did not bother me as much. I think if I could have financially swung it I would have had nursing care for her at the Assisted Living facility for her. My suggestions are pray about it, consult with her doctors and do what you think will be best for you and your family.
Re: When to go into the nursing home????? How do you know???
August 28, 2007 11:33AM
My mother is 68, receives $1000.00 per month with no assets.
She lives by herself in a senior subsidised housing apartment. These units have grocery and restaurant transportation a couple times amonth. They have gatherings and social hours. They look out for each other.
My Mom falls and has balance problems and chorea. She is not ready for nusing home yet.
I started by contacting my county office on aging or something called senior options in our state of Ohio. They were very helpful. Mom also has a emergeny response button, and someone to come in ocnce a week to do laundry and cleaning, help with bathing.
Don't know if you may have something like this in your town.
Re: When to go into the nursing home????? How do you know???
August 28, 2007 12:20PM
My family went through the same thing with my Mother. My Dad always said as long as she knew where she was she would stay at home, but thankfully the Dr. stepped in and made the decision for us. She had gotten hurt at home and it was time.
I think you just know when that time is, if not then I think it is when they become a danger to themselves or others. Hope this helps a little
Re: When to go into the nursing home????? How do you know???
August 28, 2007 07:40PM
Thanks for all of the replies. She is unable to get housing because she has terrible credit and a felony on her record for making an unwise choice a few years ago. I tired to get her in a gov. sub. apartment and they are not allowed to take anyone with a felony. She was drinking and driving with my nephew in the car. Of coarse she would have never done something like that if she did not have HD. So basically she will have to stay here until I feel the time has come. HOpefully I will be able to find a place that will take her. I need to start doing my homework on NH's.
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