I need some advice. I am 48, and hubs is also 48 and has Early Onset. I work as a high school teacher and I am worried that hubs will not be able to stay home alone when I return to school in the fall. He will need some help with getting dressed each day and eating something for lunch as well as a companion. Should I look for friend volunteers, look at our church or start to pay for it through an agency. What are other experiences?? We have 2 teens that attend the school I teach at, and we have such a busy life already, how does that all work?????? I am worried about how to make it all come together. We have btw contacted an elder care attorney and have already made some changes as a result of their advice.
We've had an aide in our home about a dozen years now. DH has a LTC policy that has covered it. We needed an aide when he retired due to MS. At first the aides only came for half a day, but then as he got weaker, full days. Now I have an aide here 5 days a week, 9 hours a day. I work full-time. The aide helps with showering, dressing, eating, etc. The aide also takes him to doctors appointments and out to do small errands. As DH becomes more confused, it is good to have someone here overseeing things.
Friend volunteers or church members might be good for short-term respite - say on weekends, school vacations, when you want to get out alone for whatever reason. But it might make more sense to have a paid caregiver through an agency while you are working. I think it would be an awful lot to ask of a friend or volunteer.
Another problem with volunteers is that they are not always reliable. Sounds like you need someone who will definitely be there while you're at school.
Since dementia is such a challenging disease even for experienced caregivers, I would recommend you hire an aide who has experience with caring for someone with Early Onset dementia if you can find one (probably through a home health care agency). Aides can be expensive, particularly if you do not have LTC insurance. The hourly rate where we live (NY/NJ/CT) is $20-$25/hour. Friends and volunteers would be okay if your husband is not agressive and compliant but as others have said, I think it would be alot to ask from a friend or volunteer.
Thanks acvann, the bummer is we have no LTC since we were still pretty young we really had not considered that!! Wish we had, so I would have to pay out of pocket. At this point I am thinking he will not need a lot, just some kind of check in. I am also trying to save money to help with care down the road. I also need to consider how to pay for college for my teens, seems so unreal at times, paying for college for our kids and nursing care for hubs!
Yes, you are so young-I wouldn't have considered LTC at your ages. Perhaps start with your network at church-someone may have caregiving/nursing experience and would be willing to come in for a few hours a day to help. If not, my guess is someone will know someone who might be willing or who does caregiving privately (not thru an agency) which would be less expensive. No matter who you get, please check any references carefully and make sure any valuables and financial paperwork are safely secured out of sight since you will not be home. Good luck!
My husband has stayed home alone for several years but has always kept himself busy doing projects at home. He has slowly progressed and I felt he needed more activities during the week.
I asked our Sunday school class for help. We have one of the guys in the class take him to lunch once a week. He also goes to a mens bible study for lunch every Tuesday. He can't follow everything they talk about but the guys cut up and enjoy having him there. On Thursdays he goes to a senior center with a neighbor who is also disabled. Once a month he goes to feed the homeless with some of the women from our class. Our youngest son is a school teacher and comes when others can't to spend time with is dad now that school's out.
Other are correct that you can't always rely on volunteers. There are times when someone can't pick my husband up. Like you I work full time. This arrangement will work for awhile but by years end I think I will need to put my husband is an adult day program.
Meals-on-wheels if your community has that service would work for lunch. I agree looking for help through a reliable agency might be the best. I paid a man in our daughter's church who was a CNA to come every Friday during latter stage to visit and supervise hygiene. Often took hb for a ride and walk through Wal-mart during the winter.
Maybe volunteers could get him up and ready for the day and drop him at an adult day care? Since you're a teacher, you probably get off work mid-afternoon and could pick him up.
We are fortunate - DH bought LTC and disability insurance when he was in his early 40s, long before he had medical issues that ultimately were diagnosed as MS. He had a very good friend who sold insurance and he followed the friend's advice. Sadly, that friend passed away a few years ago. We will always be thankful for his insight.
We looked into LTC insurance but dh has had Hodgkin Lymphoma since age 50 so he didn't qualify. I would never have thought we'd need LTC for az. My 90 yr. old sister in ALF has long term insurance but thankfully she doesn't need extra care these days. I've decided if a nursing home stay ever happens I'll use that LTC insurance for an attendant since I won't be able to be with her because of dh and his care. I have had volunteers sign up to stay with dh but I'm not sure any one of them is aware of what staying with him would be like. He isn't easy to deal with at times. I of course am not working outside the home as others are. I don't see how you do it - my admiration for all of you who work full time. It truly must be a "36 hr. Day".
I am also working in a school district and have a college student at home. We barely made it through to the end of school before summer break. DH is late stage 6. At the start of last school year he was able to make it through the day with someone checking in on him now and then. I used relatives and friends. He was able to use the phone then, too, but now he wouldn't know what to do in an emergency. By May he was getting into so much mischief home alone that I really should have taken a few weeks leave. My suggestion is to prepare your home. Put away anything that could cause trouble. Unplug appliances that he might leave on all day. Same with water. My DH always leaves the water running. Guns, knives, even screw drivers. My DH unscrewed cupboards while I was gone all day. Hide the care keys. Put away pills. Etc, etc. I learned with each new incident. DH is going to daycare one day a week this summer. Call your taxi service and see if they have rates for the disabled. You have to be 65 to get a senior discount. It took us a month to get this but for $6 he can get a 30 min ride to and from daycare. I am fortunate to have my sister as my daytime caregiver. DH can never be alone anymore. I never thought he would progress as fast as he has. I was not prepared. Think ahead. What he can do for himself now may be gone in 10 months.