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12-19-2016 08:23 PM
It's the holidays. I placed my husband in Hospice at the beginning of October. He had an "episode" the end of September which left him unable to situp, talk, walk, or feed himself. I say "episode" because I don't know what happened exactly. Prior to his afternoon nap he had been talking to me, fed himself lunch, walked to his chari with the aide and myself and was able to sit up independently. After lunch his whole body was flaccid. I didn't send him to the hoispital because they can't fix his dementia. For the first three days I thought he was going to die, but he didn't and here we are facing Christmas.
I didn't rea;ize how draining these past three months have been on me till now. I'm so tired regardless of how much sleep I get and I feel no one cares about me. They always ask about my husband, but not how I am. I spoke with my best friend tonight and told her I was just so tired I don't have the energy to deal with anymore problems and she said, "well maybe it's time to place him!" I told her now wasn't the time to talk about that.
I just want someone to listen to me, to be there for me. I realize it's difficult to listen to me. I've chosen to care for my husband for the past three and a half years. And now that we are facing the end, who knows when, how do I say enough and put him in a home? My therapist tellls me to get more help. Okay, but then when do I have them come into the house. I have an aide help me get him up and then I go out for a couple of hours. I come home the aide leaves, I feed him lunch, then he takes a nap for a couple of hours. I sit him up in his chair, give him his drink, and meds, then I lift him into bed and again he sleeps for an two hours. Then I give him his last meds for the day and change him, let him rest for another couple of hours and I check his pants, change as needed and then tuck him in for the night and I'm off to bed. I look forward to our time alone. Three afternoons a week I swim and a caregiver comes in and sits with him while he's in bed. So I fet out.
But my feelings are more about feeling isolated and alone. It's so hard now that my husband can't talk. I'm constantly guessing what does he need? And hoping I'm giving or doing what he needs! And waiting for him to die. No one wants to talk about it and we can't talk about it anymore.
I'm trying to live one moment at a time. I can deal with my husband and what he needs, but I don't have any left over energy to deal with the house or any issues involving the house. I just can't do it all anymore. Now if I could just let go of the feeling I NEED to do it ALL, I may make it. One moment at a time.
Thank you for reading. Any suggestions, not involving placing my husband or getting more help would be greatly appreciated.
10-11-2016 06:05 PM
Oh my, the death of your therapist is a blow! I'm very attached to my therapist! Good grief! Another thing to grieve over. I'm so sorry.
It sounds like you've taken care of the many things that most folks have neglected, and you're taking care of your health and your mind, too, (when you find another therapist!) The loss of your brilliant husband/friend/companion is so painful, and ongoing.
I hear you about having a quiet home under your own control.
I'm so glad you've written.
We are here.
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.
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