How to find people to stay with DH when I need to go out
Hubby was diagnosed recently with mid stage Alzheimer’s. He needs 24 hour supervision, and though friends have said to let them know if I need anything, I find it hard to ask for help. Most aren’t available during the week, so I have left him alone to run an errand or go to an appointment, usually not for more than an hour. I think it would really upset him if I called in someone he doesn’t know.
How do you manage this? I need to get away sometimes and don’t want to or can’t take him with me. I do leave a large bold note with our address, my phone number and to call 911 in case of emergency when I leave.
Thank you for any suggestions
Comments
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My DH can still be alone at this point, so I can't speak from experience yet. However, you have come to the right place for advice. The people on here are so very helpful.
I am going to throw this out, but again, I can't speak from experience yet. Once DH is no longer able to be left alone (which is coming soon, I think) I plan to try a helping hand type website. I found the idea on another message board, and it reminded me of the dinner trains I have participated in for friends w/cancer. When someone asks how they can help, I will give them the website and let them choose how and when to help… and the website would only be viewable by the people I "invite." I am hopeful it will be a solution for me, at least until I have to hire help, but only time will tell.
I know when I ask another person how I can help, I actually mean it. So, I'm guessing some of the people who tell me to let them know how they can help actually want to do something. I know it's hard, but don't be afraid to ask. The worst they can do is say no.
Here are a few of the sites I am considering.
I am sure more experienced caregivers will have advice for you on here. I hope you can find some help.
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Ahh, the Holy Grail of caregiver needs: Someone to watch our loved one while we get things done or just to get away for a while.
I believe this is why memory care homes and nursing homes can charge so much. When caregivers just cannot take it anymore, we reach a point where we will pay through the nose for someone to care for our loved one.
I feel for you my fellow weary caregiver. Search for my article "The Cavalry is Not Coming." The longer this goes on, the fewer people I find are able (or willing) to help me with my dear wife. When this began, I had imaginings of family, friends, and medical teams swooping in to help me. That help never arrived, and it has been ten years now.
That being said, there are things you can do to adjust to your new reality. Bundle errands so that you take your loved one with you on fewer (but longer) errand runs. Find an adult day care if possible and arrange for scheduling a day (or more) per week. Some things will get easier (believe it or not) as your loved one's dementia progresses. You may find that your loved one becomes more accepting of something like adult day care when the dementia progresses. Hang in there through the rough patches - as the disease progresses a few things get easier.
Love Bill_2001
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My best advice is start ASAP trying to identify your best options. Many people put off trying to find a helper till they are past their tolerance level, and then take the first person an agency or whatever sends. Think of people you might know who would be a caregiving personality, you could approach them to see if they might be interested. Or find an person through an agency. Then introduce them to DH as "a friend I haven't seen in a while", or some fiblet that does NOT describe the situation as someone to care for spouse. Maybe say "she is coming over for coffee and a short visit." Decide from that short visit if you want another visit, growing the relationship/expectations as you go. Do not say, "She is coming to help the loved one"…..our spouses never seem to want help!
Remember any one you bring in will not be familiar with your home, or expectations, or routines. Gradually fill them in on what you need…that includes showing them how to make coffee or tea or lunch, general things that need to be explained. Once your loved on is accepting of the person, then have the caregiver come for a visit, and after 15-30 minutes, mention to spouse, "I'm going to go return this book to the library" or whatever errand you have…."Mary is going to stay till I get back, she is going to put the dishes in the dishwasher". Change the script to fit your situation.
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@MamaV I’m sorry that your husband’s diagnosis has led for the need to be here, but glad you found this community. Everyone here understands what you’re going through and will have excellent input for you.
It sounds like my husband is very close to the same stage as yours. I can still leave him alone for a couple of hours but see that ending soon. My to-do list today includes touching base with neighbors to see if anyone has referrals for in-home care, just someone to be with him. I’ve had better success in getting referrals from trusted friends/ neighbors. Also, since my husband’s care is through the VA, I can contact the social worker assigned to his care. I’m most optimistic about getting referrals from locals since we live in a very rural area where resources are limited.
I hope you’ll touch base and let us know what works.6 -
thank you so much! I will look into these
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thank you! I will check out the article, and I do appreciate you sharing your experience.
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Thank you!
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This is great. Thanks!
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I just read where today is officially National Caregivers Day, and I am waiting anxiously for all the thank you's to come rolling in. From the family members and friends, in recognition of the years of loving care we have provided. So far, though, nothing.
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MamaV, please don’t trust that your loved one will know to call 911 in an emergency. Quite a while before my husband went to memory care. I asked him what he would do if I got sick and was lying in the floor. His answer was that he would go outside and try to find a neighbor. when I mentioned calling 911, he didn’t know what I meant.
as to finding someone to stay with your husband. The area agency on aging was a tremendous help for us. They gave me 20 hours a week of respite care. That meant that a caregiver would come to the house for several hours several days a week and free me to run errands or go to just go to the . Please call your area agency on aging and tell them your situation.
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Bill is so right in his assessment and his article The Cavalry’s NOT Coming is so worth reading. Well meaning friends quietly slip away as do well meaning sons, daughters, brothers and sisters. They all have their busy lives. Prioritise your jobs and take your DH with you. A simple explanation to a doctor or hairdresser “we come due to necessity as a team” Use shopping online where you can, life changes from here-on-in, make it as pleasant and enjoyable as you can for both of you because this is it and it’s a long haul. Don’t give everything up just change and adapt. Come here often and read and ask questions. Good luck.
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Hip hip hooray Chris20cm
blob:https://alzconnected.org/424379b7-6683-4188-96df-1b1e277081f7I just read your input I too am now waiting for the accolade of thanks and recognition for National Caregivers Day! Not sure if any one out there is going to have time to recognise little old me and my job or even acknowledge the fact that we are here and could do with a little help too. It’s this site and all the wonderful people here who, when needed wrap there arms around you and smother you in recognition that counts. Thank you for bringing this to our attention.
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Start with your city or county office of the aging. They may be able to point you to drop-in programs that they have or resources in the area.
VIsit some memory care places near your home. The admission people are typically social workers that may also have contacts/ suggestions for care giver respite.
Maybe a friend could take your husband on an quick uncomplicated errand.. My husband took the neighbor to the gas station then the leaf dumpduring the fall, to give his spouse a break.
Sorry this is happening to you. But ask your friends.. its hard to know how to step up if you havent dealt with this.
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If there is an Oasis Senior Services in your area, reach out to them. They can help you with in home caregivers as well as assisted living/memory care facilities. We found them to be extremely helpful and supportive.
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My husband’s care is also through the VA. What I found out by talking to in home care agencies that are VA approved is that the most they will cover is 100 hours of care a week. You will need to pay out of pocket for any additional care beyond the 100 hours. The Elizabeth Dole Foundation was extremely helpful and supportive. Contact them for whatever else you might need. They have a pipeline of agencies that they work with to support vets and their caregivers.
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That’s helpful info to have, thank you. Right now I’d only need someone to stay with him while I grocery shop or while I’m at doctor appointments. I need to revisit the Dole Foundation.
Thank you again!
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When the VA provided respite care my DH didn’t want her to come. So I told him that she was coming to help me by doing light housekeeping while I went for my doctor appointments. The first time I stayed home with them. The second time I left for an hour. The third time I left for the full 4 hours. After that he asked if “his lady” was coming that day.
I would no longer leave your DH home for any length of time. When the nurse was evaluating us she asked my DH what would he do if a fire broke out. He’s thought a long time and finally said he would try to put it out. She asked him again later if he could think of anything else and he said no! He would not have called 911 or got out of the house. He could have died in the fire. The nurse told me later that under no circumstances should I leave him alone for any length of time. I never did after that.4 -
I too,used to escape to run errands for up to an hour at a time, even 6 weeks ago. I can no longer do this. I can quickly walk the dog for 5 minutes up and down the street. I'm worried of my DH getting out of bed and falling down the stairs. He can barely manage to sit up on his own but surprises me when i'm not looking. I am cautious about his abilities when I'm out of sight. In an emergency they do not know how to react!!
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I live in a smaller city so resources are slim. No respite care. Not many community agencies who offer help. (And no family nearby.) But there are several private companies the provide home aides. When I could no longer leave my DW alone, I decided to engage two aides — from two different companies — for one morning each week. This allowed me to compare the companies and the people. I also thought two people would provide more social contact for my wife. After most of a year, one has worked out well. The other left, then her replacement left, but the third seems to be excellent. I use the two mornings a week of time for errands, appointments, and workouts at the gym. I also developed a "care plan" / emergency booklet in a three-ring binder that provides key contacts. health insurance information, medications, brief health history, and a description of my DW's daily routine, capabilities, needs, etc. I initially did it in case I was in an accident (or worse) and someone had to suddenly step in to help my wife. I use it with the aides as an orientation and resource, which they seem to appreciate. As my wife's condition deteriorates, I update every few months as needed.
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thank you! I will
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Great idea! I hesitate to bring someone he doesn’t know in, because I don’t want to humiliate him thinking that he needs a sitter. But he does! I’ll eventually arrange for aids.
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Great advice. Thank you!
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I can sometimes sneak out after he is asleep or before he wakes up. Our daughter comes once a week for half a day so that I can get out. I am in the process of hiring some help. After a few years of being home 29 hours a day, eight days a week, 500 days a year, a person gets cabin fever. I used to take him with me but I can't do that anymore.
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Thankyou @mroberts8 That sounds like a very good personal resource book. I think I’ll set one up for my DH. It would also be very helpful for our children in an emergency.
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Hey MamaV, might have been already mentioned but try Care.com. I’ve found 2 very good people using this. You’re able to read bios, references, and then reach out using their messaging tool. They all have background checks. Of course there’s private agencies like home instead. But also word of mouth is very powerful. Tell your friends you’re looking for someone for 3 or 4 hours a day for a couple days a week. Or whatever. You’d be surprised how many people know someone who knows someone. Once you find someone there’s a sort of get acquainted period. That’s a whole other discussion.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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