1. < Caregivers: Dementia
Mentor

Introductions: Are you caring for someone with dementia?

Posted by Scott, Volunteer Mentor @IndianaScott, Aug 30, 2016

My mother-in-law (MIL) had what was finally determined to be frontal temporal dementia. She had the disease from her 60s until she passed away at 86. My wife was especially involved in her mom's caregiving due to some serious denial in other family members and a GP who refused to diagnose, even when significant deficits were obvious (mistaking the UPS deliveryman for her husband and not knowing the difference between roads and sidewalks). The most unfortunate result of this, to me, was the lost time when my MIL and her family could have been having meaningful and important discussions about significant matters of importance to her and them.

In my wife's years of fighting her brain cancer, she, too, exhibited many of the aspects of mental degradation and physical losses one would affiliate with a dementia patient.

As an aside, for several years I worked for the national Alzheimer's Association raising money for their research programs nationwide.

I wish everyone struggling with this disease and their caregivers and families strength and peace.

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

tsoy | @tsoy | Sep 18, 2016
In reply to @macbeth "@tsoy Thank you for your information. When the time comes to get someone to help at..." + (show)
@macbeth

@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?

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@macbeth
When and who to get home help from is a GIANT question! I started with a middle schooler who was a neighbor friend. She would stop by the house on her way to school and make sure Mom took her pills and ate the breakfast I left out for her, at that time that is all we needed. When it became nessaccary for more help I decided to go with an agency. There are pro and con to both private and agency care givers. An agency will vet their employees, background checks and such, they match your needs with the care givers skills, when there is a need for a sub the agency will provide one. The agency is also insured, so if anything happens in your house that is covered. In my community we have 2 national agencies that provide care givers, NOT medical care, that is a different deal altogether. Both charge the same amount, we pay $18.50 an hour, and yes the care givers don’t get much of that. You might so on line to search for an agency then check if they are in your area, AARP web page might direct you with that. The agency I went with was able to provide a care giver right away, we did not have to wait "until they found someone". Checking with your local council on ageing is a great idea as well. Starting WELL before you need the service is a great idea! I hope I don’t have to place Mom in a facility, but I think I need to start looking at them now, if only to educate myself.
@indiana Scott is correct there are many potential problems to overcome. My experience has been positive with the agency care givers overall. I did have one that decided after her first visit that Mom was too much for her. The first care giver we had was with us for 2 years and she was great. We have a new one now that I think is going to work well for us as well. I have been able to meet each care giver BEFORE they started caring for Mom. As Mom's needs change we may have to change care givers due to their skills.

I also installed a camera system in the house, at first to keep track of Mom when I was away, now I can look into the care givers as well.

I just want to mention that if anyone is caring for a Veteran or a spouse of a veteran you MAY be able to obtain a VA benefit called Aid and Attendance, the Vet must have been in service during certain periods of time to qualify and there must be a monetary need. I have recently completed the process for my Mom and it is going to help with expenses, but it is the government so it’s a paperwork nightmare! Worth the effort if you qualify though!!

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tsoy | @tsoy | Sep 18, 2016
In reply to @macbeth "Wow, again, @tavi! Thank you! Since we live in a rural area near a small town,..." + (show)
@macbeth

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!

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There is a VA program for home care for the Vet only, I can't remember the name of it. The second VA resource is for Vets and spouses, and it's called Aid and Attendance. I when through the paperwork nightmare to get Mom qualified for that one, it helps out and worth looking into if you qualify. Check out the VA web page.

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rmftucker | @rmftucker | Sep 18, 2016
In reply to @macbeth "@tsoy Thank you for your information. When the time comes to get someone to help at..." + (show)
@macbeth

@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?

Jump to this post

It was about three weeks from the time we had the appointment with the VA until we had our first visit from our Respite worker. I was surprised at how quickly the director interview was scheduled and how quickly she assigned someone. Some of our other experiences with the Veteran Choice program have not been as speedy.

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Mentor
Scott, Volunteer Mentor | @IndianaScott | Sep 18, 2016
In reply to @annie33 "Every time my husband goes to any Dr. he has what they call a panic attack...." + (show)
@annie33

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

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Hello @annie33. I am Scott and it is nice to make your e-acquaintance here at Connect. I was the primary caregiver for my wife for 14 years (brain cancer with many symptoms of dementia) and a secondary caregiver for my mother-in-law who had dementia.

I am not a doctor, nor am I a trained medical professional of any kind. Rather I am just a caregiver who has spent many years in the front lines of taking daily 24/7 care of a high-demand patient.

My wife exhibited significant anxiety and panic over visits to the doctor and later even when a nurse would come see her. At a very late state she finally confided in me she was worried the doctor or nurse 'was going to give me more bad news'. Once we orchestrated a couple visits with only positive news (not telling lies, rather just no bad news) this finally began to lesson.

That said, I will say my wife suffered from one of the most severe cases of neurobehavioral syndrome her doctors at Mayo had ever seen. It was crushing on her and debilitating to me. Her GP here at home was against using meds, but with the help of her neuro-oncologist we began a course of meds, which over the years with much tuning, fine tuning, changes, etc. started to help her. In the end her daily regimen was for over 3 dozen doses of various meds a day, but it finally gave her some help! Her GP continued to be against any pharmacological approach to my wife's problem, but it was the only way to even touch (in a good way) her panic, anxiety, abulia and perseveration.

I suggest you keep trying to discuss this topic with your husband's doctor.

I send you strength and courage!

REPLY
macbeth | @macbeth | Sep 18, 2016
In reply to @macbeth "Wow, again, @tavi! Thank you! Since we live in a rural area near a small town,..." + (show)
@macbeth

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!

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@tavi Your situation sounds so similar to ours. I, too, am looking primarily for a companion at this point, and expect the same reactions from my husband as you are receiving.

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Mentor
Scott, Volunteer Mentor | @IndianaScott | Sep 18, 2016
In reply to @tavi "@macbeth -- starting before you need someone is a very good idea. My heart goes out..." + (show)
@tavi

@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.

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Oh my, @tavi! All the agencies must not only follow the same business model, but also the same script with their clients!

'Fit' with the patient is the most crucial aspect and yet one their model ignores more often than not!

Thanks for sharing!

REPLY
macbeth | @macbeth | Sep 18, 2016
In reply to @macbeth "Wow, again, @tavi! Thank you! Since we live in a rural area near a small town,..." + (show)
@macbeth

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!

Jump to this post

@tsoy Super! Thank you!

REPLY
macbeth | @macbeth | Sep 18, 2016
In reply to @macbeth "@tsoy Thank you for your information. When the time comes to get someone to help at..." + (show)
@macbeth

@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?

Jump to this post

@rmftucker Thanks! Good to know! I know the Veteran's Choice program is rather cumbersome. I've heard they're working on it.

REPLY
macbeth | @macbeth | Sep 18, 2016
In reply to @rmftucker "The social worker at our local VA clinic made the contact with a local elder care..." + (show)
@rmftucker

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.

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@rmftucker Good idea, to stick around for a time or two.

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macbeth | @macbeth | Sep 18, 2016

Thank you all so much for this information and support! I really appreciate it!

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