My DH is in late stage 6 and goes to daycare two days a week. After getting him up, bathed, dressed, putting his shoes and socks on, giving meds and breakfast, shaving him and taking him to potty and wiping bottom, then difficulty getting him in the car, I noticed his fingernails were dirty. He eats with his fingers. It just occurred to me how very hard it is to have total responsibility for another's person's body. If this is all we had to do, it would still be hard but combine it with everything else we have to take care of, no wonder we are all so tired.
But reality set in when I read Elizabeth's post about DH pooping on sofa and all the yelling. I stopped my pity party and felt love for her way down deep in my heart.
I agree Dazed. When I notice the nails looking dirty I know it is time to clip them again. I try to keep them short. My guy bit his nails all his life before all this craziness began. He doesn't now. I guess he forgets that he is a nail biter. I hated it when he was well because they always looked so bad. I wish he WOULD still do it now. It would be one less thing on my list to do. I take him to a Podiatrist to have his toenails done. Wish they would say "hey, can we clip those fingernails for ya?". (Sigh) Nope, doesn't happen. I also agree that I have to keep reminding myself that it's not nearly as bad as it could be. My guy is very cooperative and manageable. At least for now. I count my blessings!!!
Dazed, When I read elizabeth’s posts, my reaction is anger. Is this the best our medical system has to offer to her and her husband? And what kind of useless outfit is this hospice? All they do is tell elizabeth to give her husband more Ativan, which is “as needed” anyway. They don’t even seem to have a doctor.
And, Aunt B, why do you have to take care of your husband's finger nails when a doctor cuts his toe nails? (I did that, too, and I was not very good at it.) That is specialization run amok.
Everyone on this board says how much they hate AD, but what I hate is the fact that our society offers so little practical help for people who are afflicted with this disease and for the family members who are taking care of them. And what help exists is available in a patchwork fashion - one benefit for those who were able to purchase LTC insurance, a different benefit for veterans, a different benefit for those who qualify for Medicaid, and almost nothing for everyone else.
As my burden is easing – my husband is now getting excellent care in a state-owned home for veterans – I find myself getting angrier on behalf of other care givers who have to wage this battle alone.
myrtle, my experience has been the same as yours and AuntB's...no, a podiatrist will NOT cut fingernails. Like AuntB's husband, my husband used to be a nail biter but no more. You'd think he was in some secret Chinese society where they allow their nails on the index finger and thumb to grow until it curls! No way can we cut those nails. (actually it's the nail on the pinky they let grow, but hey, you get the picture).
You've truly expressed how I feel about the Hospice care Elizabeth and her husband are receiving...useless. I think in may be in part because she is a nurse but why hasn't a DOCTOR been to see her husband while he screams his head off all day/night? I've been doing this 6 years now and if it were me, I'd call them and demand someone do something. Or I'd give him what I thought were adequate doses of Seroquel to calm him. This is cruel for both of them.
Yes, a good description...a patchwork of help and benefits. Even with the help of LTC insurance, Medicaid and VA benefits most people are forced to figure out on their own what benefits they are eligible for and entitled to. The geriatric care manager I hired to advocate for my husband has told me that I'm so difficult to deal with she and others who want to help me won't because I'm so difficult. Yeah, well I pay you $115/hour and I'm not difficult when you and the doctors/facilities do the right thing.
Thanks for the nice comments, everyone. Today when the Hospice aide was here for the hour, we discussed how he is noticeably declining. We put him back to bed, and it took both of us to do it. DD called and has decided that she and s-i-l do not want the grands getting off the school bus here after Labor Day, even though they were going to help pay the private aide to care for DH while I cared for the grands until suppertime, and then took them home. They do not want the grands exposed to any smells or to his yelling. Well, whatever, but I still am going to have the aide for the late afternoon and evening as planned. It will just take a bigger chunk out of our finances than I expected. (Thanks so much, DD).There are plenty of things I can do with the time, including going up to DD's and having dinner with them (I cook for all of us anyway), and then just working on my creative stuff or reading or watching TV or whatever--maybe running up to the library. I will be sure to help the aide as need be, because even s-i-l last night almost couldn't do the transfers alone. And DH looks bad. Yes, we are drugging him, but there's no question that he is declining in every way. He has always been the cat with nine lives, but I think we're on life number nine. Stay tuned.
LFL, your geriatric care manager should be able to handle difficult people as part of her job. (I'm not saying you are difficult…just that professionally speaking she should be able to deal with you, me, anybody else, whoever). And it is outrageous that you have been told that they won't help you because you are "difficult." Hello! If you were paying her $1.15 per hour or $115 or $1150 she should be helping you and your husband because…Well, doh!…that's her job. If she can't deal with it she should be in a different field.
I notice that every one of your posts contains a plug for an ALF in Texas where you say your grandmother and grandfather were placed. Please note that most of us do not live in r Texas, so it is not feasible for us to place our spouses in that facility.
Also, if you google "davisjone," you will find that the same screen name has been used to plug other medical providers and has also been banned from a DIY forum. So maybe that's not the best screen name to use.
And now back to the subject that Dazed started us out on - this job is hard.
Even though having your spouse go to day care gives you some relief, just getting them ready and out the door is a lot of work. Sometimes when I picked my husband up from day care I realized that I had not properly shaved his face or that he was wearing mismatched sneakers.
And I know that this has been said before but one of the problems a lot of us have is that we are no longer young. I am in my mid-60s but I feel like I am a wreck. Now that my husband is in LTC I don't know which of my medical appointments I should make first. I need to have so many things done.
start with a physical, then ask your doctor to prioritize your needs.
That is what I did this year after I got insurance and decided I wanted to survive this disease. I still have things to get done like a dermatology body scan and dreaded colonoscopy but right now getting my cancer checkups setup is first on the list.
Yes, Myrtle, age has a lot to do with it. I'm 78 now and spent 8 weeks in therapy for my back after lifting a wheelchair up from a friend's basement and into the trunk of my car. Feeling like Wonder Woman then but a real wimp now. He has never used a wheelchair but when it was offered, I thought I'd better take it for future use. Just putting his shoes and socks on are hard for me now but I wouldn't want to give up those two days in daycare. That keeps me half-way sane.
Elizabeth, you brought up a fine point about your sil not wanting the grands to be exposed to the smells, behaviors, etc. I have wrestled with this also. We need to teach our children/grandchildren to learn about life and death. And to learn a lesson about caring for our sick and elderly, but at the same time, how much is too much and how much is too soon? I am just venting here. I struggle with this. My grandson (9yo) is very mature about his papa and even tries to help me clean up the mess, but his 14yo grand daughter is totally revolted by him and gags and roll her eyes. However in older generations the elderly stayed at home and used "slop buckets, etc" and the kids where aclimated to the sights, smells and sounds and just understood that was part of the life cycle. I am still very careful to make sure that none of them are with him alone for even a minute. I do not know what he might do next. Hugs to you and all caregivers, there are so many battles to be won.