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Topic When do you arrange for a facility Go to previous topic Go to next topic Go to higher level

By Ibepar2 On 2014.11.09 13:13
I am struggling with the decision of moving my husband to a care facility. My husband is 84 and he has had Parkinson's for 12 years. I have watched slip away day by day. I love him very much but just don't know how much more I can take. I am housebound with exception of 12 hrs a week when caregiver comes in. He is pretty much confined to a power chair. He losing sights little and confused a lot. He can know longer work on his computer, so he really has nothing else to do. I think at time he would enjoy being around more people in a facility but he cannot speak a lot of the time.

By JulieB On 2014.11.10 08:51
Ibepar2 -- I just responded to your other thread and see now that you do have a little help. Twelve hours isn't much, though.

My husband has been diagnosed with Parkinson's since 2004, but we know he was exhibiting symptoms long before, which is how it often goes. When Lewy Body Dementia became part of the picture, things were often close to impossible.

Making the decision for placement was THE hardest thing I've ever had to do. Tears, anguish, prayer, second guessing, advice from people who'd walked the path before me, all went into the decision and continue to be part of my days even after Michael entered the facility. Here is one thing that helped me decide, and of course it would be different for many.

My sister in law had a husband with Alzheimer's years ago and had reached the place where she could no longer care for him for about 100 reasons (his wandering, his resistance, her job, their remote location, his size, her strength, etc.) She knows the emotional suffering a caregiver experiences when they reach a point of utter exhaustion and inability, so I found her empathy so helpful to me. She is also a nurse.

Anyway, she asked me how many people would be taking care of my husband in the small veterans home I was considering, in a given 24 hour period. I had toured the place, spoken to several people there and three wives whose husbands were there, and this is what the answer was: one RN, one LPN and one-two aides (they call them HSTs -- Human Services Technicians), one Physical Therapist, one cook (although of course there are more people making food than that), one-two recreation employees, one chaplain, one social worker, one laundry person, one housekeeping person and a few volunteers. (there are many cooks and housekeeping and laundry folks and rec people, but I just list one each as a minimum of what might be reasonable in one day). I don't know how many that adds up to, but in one given 24 hour period those are all the people that do some sort of care for my husband. If you take the RNs, the LPNs and the HSTs and multiply that by three (because there are three eight hour shifts per day), it means there are over a dozen people taking care of my husband each and every day. I realize that in some facilities this would not be so, but in the small veterans home in our area, this is the case. The care has exceeded my hopes and expectations and I am in awe of all they do for their residents.

So my sister-in-law gently and compassionately asked me during the days when I was anguishing over what to do, "Do you feel you can safely and adequately do the work of so many people, day in and day out, until the end?"

The answer was no, but that didn't make it easy. Yes, Michael is safer, fed lavishly, kept clean, toileted every two hours, taken on fishing outings, given PT, and enjoys the many thoughtful things they do for the men in his residence, but I still cry every night when I go to bed and he's not there. Our home seems like the light has gone out of it with him gone. He is a very kind, humble, and lovable man.

I drive up to the veterans home and spend long days with him and it seems odd to just be able to love on him and read to him, listen to our favorite CDs together, and not do any of the backbreaking cares anymore.

Some have judged me for this decision, and that is hard to bear.

Lastly, if our local veterans home had not been an option for us, I doubt I would have transferred him to another facility. The ones in our area I'm familiar with do not provide the level of care that he's receiving now. I would probably still be trying on my own, exhausted, feeling at times (largely due to the dementia aspect of his disease) like I was losing my mind, crying more often than I do now, and feeling like Parkinson's and dementia had swallowed both of us whole.

I think at the very least you could take a day and tour some of the places in your area. Write down questions and ask them. Look for relatives in each place that you can quietly approach and ask their opinions about the care, etc.

I know this was long.... I hope you are able to experience some peace, Ibepar2, and I want you to know I understand and care.

Julie xoxo

By Ibepar2 On 2014.11.10 11:36
Thank you so much for you kind and informative words. I had never heard it explained in those terms. I know he does not want to move to one of those, and I think I am just afraid of being judge as a horrible wife. We have been married 53 yrs now and have had a great life. It hurts us both that it should end like this. Thank you for your support. It does help.

By carman96 On 2014.11.10 21:06
Do you have a support group or someone to help you make the decision? We all want to take care of our loved ones at home until the end, but this is such a cruel disease. My husband is not at that point yet, but I know that someday he might be.
If it becomes unsafe for you or him, it is time to consider it. In our area the few places that take dementia patients have a waiting list. If you live in the United States and don't have long term care insurance, an eldercare attorney can help you with the financial side to protect your assets.
This is undoubtedly the hardest decision to make. I hope you have some support.
Please keep posting and let us know how it is going.

By Mary556 On 2014.11.12 00:55
Dear Ibepar2, you and your husband are in my thoughts and prayers. Making such a decision must be agonizing for you now. There is not an easy answer but you will listen to your heart and will do what you believe is best for you and your dear one. Please do not doubt yourself or listen to anyone who would judge you harshly. Such a fool has no idea. Try to be kind to fools but do not give them a second thought.

God bless all of our PWPs and caregivers.

By Marilyn-NJ On 2014.11.12 12:06
OMG JulieB - your posting is beyond my words. I'm muddling through those same questions and concerns and it's invaluable to have you spell it out like that. I'm at the crossroad and am having such difficulty (like so many others) in making that decision. Thank you for your wisdom. Thank you all for the kindness you bring here.

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