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 Keeping our loved ones at home as long as possible 
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: Keeping our loved ones at home as long as possible
Juliet - isn't there a home care service that can provide a helper for you for however many hours you need them? From my experience they charge about $20 per hour and are well worth it. We had a person come in for a few hours in the morning and a few hours at night to help my dad get out of bed, fix meals, do light housekeeping, laundry, etc. for his last weeks at home. They would come whatever hours we needed them, which was quite helpful. Big hug, 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.

Sun Feb 26, 2012 8:09 pm

Joined: Sun Mar 15, 2009 5:45 pm
Posts: 13
Location: Northern California
Post Re: Keeping our loved ones at home as long as possible
Thank you, Lynn for replying.
Yes, there are caregivers available for around $20.00. I am alone here. Our 4 children live in other states, so having a caregiver here all night, several nights a week would be quite expensive, but it may come to that. I did have a caregiver come all night for the first 2 nights that we were back from the hospital: surprisingly, they slept on the couch in the family room where my husband has his hospital bed. Estimate for 4 nights a week, 8 hours each night, around $2500 a month: the price of sleep!

Thu Mar 01, 2012 1:25 pm

Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Keeping our loved ones at home as long as possible
The problem with dementia units is that all dementias are included. Even if it is an exclusive LBD unit (if there is such a thing) you can't get away from disturbances. Mom's roommate in the unit had a constant mantra of "help me, please help me." It took a while to get used to, but eventually it became almost comforting. During the last two weeks of Mom's life, a new patient on the unit - in the room across the hall from Mom - had a habit of bellowing out "Nurse! Nurse!" around midnight. Surprisingly, Mom slept through it.

Eventually, you need to protect yourself. When you are so tired that you doze off while driving; when your own memory is affected and you can't think straight; when you start to think the dementia is contagious; you need to find a different way of dealing with the situation. And it may come down to an economic decision. If round the clock care is called for, even if it is just your opinion, and insurance or Medicaid won't cover it, assisted living or a nursing home may be your only choice. It took my mom's near death for me to see that. And my own fears about my own memory problems, dozing on the road and at work and other things that made me see a neurologist who informed me that what I really needed was adequate and complete sleep. Where will your husband be if you become incapacitated?

I promised Mom that I would keep her at home, that she would die at home. I couldn't and she didn't. But I do take comfort in the knowledge that she had been through her parents' dementias herself and would have done the same thing (and did do the same thing) when it became necessary. If/when it becomes necessary, believe in your relationship with your husband - from the good days when cognition wasn't an issue - and care for yourself the way he would want you to. Promises made when all the issues aren't known can be forgiven.

I know you'll take care of your husband. Take care of yourself, too.


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 Mar 01, 2012 2:53 pm

Joined: Sun Mar 15, 2009 5:45 pm
Posts: 13
Location: Northern California
Post Re: Keeping our loved ones at home as long as possible
The ideal, for my husband and I, is to keep him at home till he dies. I will try and do everything I can to achieve this because I truly believe that it would be best for him and for me. When he is at home, i can check on him through the night, make sure he is OK, clean and well cared for. I know he is eating good food and has access to his favorite TV programs. I am lucky enough to have the VA fund caregiving for my husband who is 100% disabled, a few hours a day, which enables me to shop for food, etc..... I feel lucky to be able to do this for him SO FAR. I also agree, that if things get so tough that I can no longer care for him, and have run out of other options, such as paying for night time caregivers, then I will certainly have to rethink my position and place him in a home. I think each one of us has different circumstances and it seems to me that all of us are simply trying to do the best that we can under very difficult conditions. It is getting more and more difficult for me to talk over the phone, because this disturbs him also, so you guys are the place I am coming to for help, advice and e-hugs! God bless, J

Thu Mar 01, 2012 11:39 pm
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