Introductions: Are you caring for someone with dementia?

@tsoy

Thank you for your information. When the time comes to get someone to help at home, such as a paid caregiver, to enable the main caregiver to run errands, keep appointments, etc., how do you find someone for that service? We live outside of a small town. Is there some sort of agency? Is there a choice? What if the person you get is not a good match - for instance, if there are trust issues or if your vulnerable adult finds the substitute caregiver irritating?

Wow, again, @tavi! Thank you! Since we live in a rural area near a small town, may I ask whether you are in a larger town or city? Did you go through a local nursing agency, church, etc? I know I need to just begin to make phone calls, but I am wondering if there is something I'm not thinking of. But I think I have a couple of ideas of where to begin... Oh my. And I remember, while working in the court system, how several people came in, who listed CNA at one of the local nursing homes as employment, of whom I can only say I thought: "Oh man, don't they do background checks, or are they just that needy for help." I don't want to be unfair. I know a lot of kind, good people, too, who have held those positions, but the bad ones just should not be kept on, but often are. And, so, when looking for in-home help, I will be running all names through our local sheriff's office, asking for a state-wide, or national background check Still, people sometimes slip through, but I plan to do what I can, first, to protect both of us. I'm thinking that the VA clinic in a small city near us may be helpful. I would like to clarify, too, that my previous complaints about the VA, dealt more with admission of Agent Orange exposure related diseases and damages. I have found that they otherwise try to be helpful, generally. So, they might be a resource. I'll check them out, too. Thanks again for your advice and warnings!

@tsoy

Thank you for your information. When the time comes to get someone to help at home, such as a paid caregiver, to enable the main caregiver to run errands, keep appointments, etc., how do you find someone for that service? We live outside of a small town. Is there some sort of agency? Is there a choice? What if the person you get is not a good match - for instance, if there are trust issues or if your vulnerable adult finds the substitute caregiver irritating?

Every time my husband goes to any Dr. he has what they call a panic attack. He has them many times when we go to supper. He has had some at other times. He starts by turning very pale, sweats until his shirt is wet and then becomes sick to his stomach. Marcel has Alzheimer's. We live in an extended care facility which is just great. We both enjoy it. He begins to feel better when he gets back to his recliner and goes to sleep. He is getting so that he doesn't want to leave the apartment or his recliner. When he has one he doesn't totally recover. I am so worried about him. I thought that surely there would be something he could have for anxiety but his Dr says no. Has anyone had any experience with this? If so I would appreciate hearing about it. Phyllis

Wow, again, @tavi! Thank you! Since we live in a rural area near a small town, may I ask whether you are in a larger town or city? Did you go through a local nursing agency, church, etc? I know I need to just begin to make phone calls, but I am wondering if there is something I'm not thinking of. But I think I have a couple of ideas of where to begin... Oh my. And I remember, while working in the court system, how several people came in, who listed CNA at one of the local nursing homes as employment, of whom I can only say I thought: "Oh man, don't they do background checks, or are they just that needy for help." I don't want to be unfair. I know a lot of kind, good people, too, who have held those positions, but the bad ones just should not be kept on, but often are. And, so, when looking for in-home help, I will be running all names through our local sheriff's office, asking for a state-wide, or national background check Still, people sometimes slip through, but I plan to do what I can, first, to protect both of us. I'm thinking that the VA clinic in a small city near us may be helpful. I would like to clarify, too, that my previous complaints about the VA, dealt more with admission of Agent Orange exposure related diseases and damages. I have found that they otherwise try to be helpful, generally. So, they might be a resource. I'll check them out, too. Thanks again for your advice and warnings!

@macbeth -- starting before you need someone is a very good idea. My heart goes out to Scott and the terrible experiences he and his wife had.... I believe the problem in finding quality care is a direct result of the business models we're dealing with. Finding care givers is one of the challenges I've faced in the last six months -- I wanted to use an agency so that I didn't need to deal with advertising, interviewing, etc. etc. I started before I thought we needed someone since I knew it would be much easier to interview / vet an agency before a crisis. The manager I talked with at the first agency seemed very understanding and provided a good introduction to the services her agency could provide -- at that time I knew NOTHING about what I was looking for or what might be available so the informational interview was great. A couple of months later when I thought it would be a good idea to start, I recontacted her for help. That was when things got a bit more difficult -- they 'needed time' to find a person who would "fit" our needs (over selling??), and when they finally found someone (two weeks later) I asked to meet the care giver they wanted to provide before she came to our home. I was then informed that I would have to pay for her time at the meeting/interview. Oh my, that money was well spent and I am so glad I said yes -- when I went to meet the candidate I knew immediately that much of what I had said about my husband and our needs had gone unheard! The woman was nice but within 2 minutes I knew she and my husband would not get along. I really don't understand how folks think the model of sending someone unknown to your home (standard model) can be successful for long-term in-home care -- and my husband certainly does not need to go through more stress than he already is dealing with. When I rejected the candidate the agency said they would continue to look and then a week later told me they would not be able to care for my husband because he would be too challenging..... Oh my again, I understand there are challenges in caring for people with dementia but if that is one of the services they say they provide I would expect them to be able to meet the challenges. Desperate, I turned to another agency -- this time my time frame was NOT what I wanted - no vetting - but they had someone ready to come to our home in two days and I decided to move forward ( I had also talked with a more senior person at the agency during our initial interview). We have been blessed with one adequate and one excellent care giver -- I have the advantage that I have been able to be home to monitor the initial visits and how my husband is reacting. (Introducing/integrating the caregivers into our home life has presented challenges and worthy of a completely separate post - you are wise to be thinking about that already!) We now have the excellent care giver (who is also a CNA) coming four afternoons a week and I am looking to add someone else, possibly with a couple of overnight shifts since neither my husband nor I are sleeping very well.

Reliable coverage in the event of illness or a care giver's vacation is always a concern. Given that we now have good support from an agency that could provide backup resources in an emergency, I would also consider adding someone working independently to our team.

Wishing you the support, courage and resources you need on this journey.

Wow, again, @tavi! Thank you! Since we live in a rural area near a small town, may I ask whether you are in a larger town or city? Did you go through a local nursing agency, church, etc? I know I need to just begin to make phone calls, but I am wondering if there is something I'm not thinking of. But I think I have a couple of ideas of where to begin... Oh my. And I remember, while working in the court system, how several people came in, who listed CNA at one of the local nursing homes as employment, of whom I can only say I thought: "Oh man, don't they do background checks, or are they just that needy for help." I don't want to be unfair. I know a lot of kind, good people, too, who have held those positions, but the bad ones just should not be kept on, but often are. And, so, when looking for in-home help, I will be running all names through our local sheriff's office, asking for a state-wide, or national background check Still, people sometimes slip through, but I plan to do what I can, first, to protect both of us. I'm thinking that the VA clinic in a small city near us may be helpful. I would like to clarify, too, that my previous complaints about the VA, dealt more with admission of Agent Orange exposure related diseases and damages. I have found that they otherwise try to be helpful, generally. So, they might be a resource. I'll check them out, too. Thanks again for your advice and warnings!

@tsoy

Thank you for your information. When the time comes to get someone to help at home, such as a paid caregiver, to enable the main caregiver to run errands, keep appointments, etc., how do you find someone for that service? We live outside of a small town. Is there some sort of agency? Is there a choice? What if the person you get is not a good match - for instance, if there are trust issues or if your vulnerable adult finds the substitute caregiver irritating?

The social worker at our local VA clinic made the contact with a local elder care center well known in the area (one I would have chosen first) and after a visit with the director who came to our home for the interview with my husband present, we were assigned a worker who has been wonderful. She fits right in and takes my husband's banter well. He always gives everyone a "hard time" jokingly but it can get wearing when it is daily, but she just shrugs it off and gets the chores done. He has a huge attention problem and is very easily distracted, but she calls him to task kindly and we both enjoy her. I did stay around the first 2 or 3 times she was here to help her locate anything she might need and also to see what reaction my husband would have as she worked with him. I think that helped and I will be doing that again this week as our regular gal is taking a two-week medical leave and we will have a different worker for those two weeks.