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10-10-2016 05:11 PM
No we don't have adult children to help us, nor do we have family that lives in state to help us. I don't know if he has any family in this country as we have never had any contact with them.
I do have someone who comes in for 3 hours in the morning and on Tuesday, Wednesday and Thursday afternoon for 2 hours so I can go swimming. So I make sure I get out everyday. Thank GOD for friends! Last month my therapist died unexpectedly, so it's been hard because I haven't found anyone to go to yet. So much change.
Today he was complaining of stomach discomfort and before I could try to give him lunch he had a vaso-vagal episode with extreme diarrhea. Now he's resting in bed. I had a stomach bug last week I was hoping he wouldn't get it but I think he did!
I wish I knew how to help him but I've done everything I can think of to keep him comfortable. Yes, we have a MOLST form, and a DNR form for the home, we also have a Power of Attorney and all the other legal papers needed. After his last hospitalization I decided we were done with that, they can't help him and it frightens him, so I'm keeping him home where he can be comfortable. I'm doing the best I can. I just need to get past my fear.
I know I'm afraid he's going to die and I know he's going to die so it's a double edged sword.
I know Hospice can offer volunteers but I'm so tired of people being in my house. I just want some peace and quiet and normalcy. Some day all of this will change, and I'll miss him terribly but I won't miss the work, the fear, the tears, the pain of watching a brilliant man slowly disappear.
Thank you for reading.
10-10-2016 04:31 PM
Dear wife who is an RN who's taking care of your husband who has Lewy Body dementia for the past three years,
I am so sorry this is happening to you. It sounds to me like he had a stroke, but the doctors are acting like, 'eh, there's nothing to be done...' But what about a little PT? if he's regained some of his abilities, then perhaps some of the disability can be reversed. it would help you to physically care for him if he could do more for himself.
I think it's a good idea to sign him up for hospice to avoid hospitalizations, and you can take advantage of what they have to offer. like the 3 to 5 days/week aide who can thoroughly bathe him in the hour to 90 minutes they can stay. The social worker could be your new best friend: ask her (or him, though i have yet to meet a mail hospice social worker and i used to be a female one) about how to help him, how to take a break, what is available in your county or city. Like a respite care program, or the best agencies to use to hire an aide so you can get away for 4 hours or an entire day. or to hire so you can sleep through the night at least one night a week.
If its Medicare hospice, then the benefit is recertified after 90 days, or three months, and then if he passes (meets criteria for decline) then you've got another 90 days. after the first 6 months, the recertification process happens every 60 days. Medicare insists on this. but you always have warning. And the social worker is supposed to help you with the transition back to regular care. you don't have to take him to the hospital even if he is NOT in hospice, if you have a living will/ advance directive. And in some states there is something called POLST or MOLST, a medical order for life sustaining treatment, which indicates that he is not to be transferred to a hospital. i can explain fore of that if it's of interest.
meanwhile you have a lot on your plate, including especially the deep sadness that goes along with missing your life partner, who he used to be.
what is helping you to survive this? who else can help you? do you have adult children who can help? Does he have a brother or sister who can take him on for an afternoon?
thank you for taking the time to write. please write more. we all learn from each other's stories.
10-10-2016 11:48 AM
Rosemary, 30 drops
Lemongrass, 30 drops
Lavender, 30 drops
About 1/4 cup fractionared coconut oil and distilled water. put it in a small plastic spray bottle and spray it on the the areas and rub it in ( massage)
this combination activates muscle memory and gave her function of her arm and leg again . I also found the best oils to use are from the company doTerra . it is up to you if you want to give it a try . i am just making a suggestion based upon what i have dealt with. We saw a response the very same day
10-09-2016 06:55 PM
I have been caring for my husband who has Lewy Body dementia for the past three years. Up till a week ago Tuesday he was doing very well. He was able to sit up on the side of the bed for his bath, he could help get himself dressed, he could walk from his bed to his chair, he could feed himself and he was able to talk.
Then he had an "episode" after lunch. I don't know what happened, but after he took his afternoon nap he was limp all over. He couldn't even hold his head up. He can no longer sit up independently, talk, feed himself, or walk. Then two day later he had a grand mal seizure in the evening.
The dementia specialist and his primary physician are saying nothing. I spoke with the office nurse at the dementia specialist office and she basically said, "It's the disease.". I am heart sick.
He has slowly regained some movement in his arms and left leg, but his right leg is flaccid and he can sit up independently or talk.
I started hospice services for him "in case" he passed as I don't want to have to call 911. I know he can graduate from hospice if he gets better, this is just so frustrating, heartbreaking, AWFUL!
I feel scared all the time and I'm an RN, but I'm so afraid he's going to have another episode and I know there is NOTHING I can do to. And I think that's the biggest problem I have, I can't make this better for him, other than caring for him. I'm just so tired and sad all the time.
Any suggestions other than me taking a respite from him or placing him in a nursing home?
Thank you for taking time to read!
09-21-2016 07:20 PM
It is most frustrating when the individual who is in self destruct mode wants to take their care giver down with them and the legal system makes it so time consuming and difficult.
Which is why you have a choice to detach from his self-destruction, standing by, but letting the natural course of things, as HE chooses the courses, moves relentlessly forward.
Detachment. While still loving him. Very hard. Also necessary for your own sanity.
09-20-2016 10:33 PM
It. Is most frustrating when the individual who is in self destruct mode wants to take their care giver down with them and the legal system makes it so time consuming and difficult.
09-20-2016 07:26 PM
So frustrating when the person you are caring for does stuff like telling you to cancel a doctor's appointment. The human's ability to self destruct knows no bounds.
09-20-2016 12:07 AM
Have been over it and over it with liver Dr who says get youself a primary care physician and tell him. I found a primary care physician made an appointment husband had me cancel it just like he had me cancell his MRI appoinment today.
09-20-2016 12:04 AM
Have been over it and over it with liver Dr who says get youself a primary care physician and tell him. I found a primary care physician made an appointment husband had me cancel it just like he canceled his MRI appt today.
09-19-2016 10:57 PM
I also am taking care of my spouse. Yes it is very challenging. My wife suffered 2 strokes that left her right side paralyzed and very disrupted speech. After over 96 days in rehab and now she is home (still getting therapy in house). I am now unable to work because of it. trying to balance out her meals, administering medications, helping with her therapy, bathing, dressing and going to the bathroom, it can get very overwhelming at times. But i hold on to the love that i have for her and just keep doing what I do for her. I wont complain because i know that GOD spared her and this is a nother test in life for the both of us. I believe that she will be able to walk again it will just take some time. As for me i am just trying to find ways to keep the income going seeing that i was self employed our income has come to a stop. A friend of mine told me to go to this web site called Go Fund Me and set up donation fund to help support our situation. So I have tried it and so far it seems to be working out .. but over all yes there are days that i get very tired and no I really dont have any help. Our children live very far away and have their own families to deal with. So I dig deep and encourage myself and remind my self why I love this woman so much and then it makes it all worth while
Hi there, wonderful husband,
You certainly take your vows seriously. Now that she's home, you realize that it's MORE than a full time job but there are no breaks. You love her and it shows. You dig deep and you do it one more day. One day at a time.
GoFundMe is a wonderful source of help. I'm glad you're gathering some contributions.
She may well walk again. I'm guessing though that she won't be 100%. I hope I'm wrong. Right now, it sounds like a lot of pressure on you, a lot of work. When you can see a little bit further down the road, there are steps you can take to protect both of you, financially. And protect YOUR health since you may be pushing really hard but at some point you may poop out. Even temporarily. And you don't want to get sick.
There are a couple of steps you can take and neither are free but the people you'd consult could look at your assets, your income, and the medical future when it becomes a little bit clearer (perhaps in another 6 months or so). Either an eldercare lawyer or a geriatric care manager can assist you both in looking at what you have and what you need to continue her care and protect your health as well.
Your wife is one lucky woman. And you are a lucky man, since based on your devotion, i'm assuming you have a fulfilling marriage. What a blessing.
How do you cope with the biggest challenges? How do you dig deep? A number of folks talk about their dogs being great sympathetic buddies. What works for you?
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