Caring for someone with dementia / Alzheimer's

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

Thanks for the great idea, @colleenyoung. I think a specific discussion is warranted given the challenges dementia can present to caregivers.

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.

Here is a more detailed introduction to me and my situation. I have been caring for my Mother for almost 8 years now. Mom’s dementia has progressed from repeating herself endlessly to a point I wanted to run head first into a wall, to where we are now. She is in good physical shape outside of the dementia and her lack of strength and balance. She still walks but only while holding on to someone’s hands, she is bent so far forward that I fear she will fall on her head any minute. I work, so we have a paid care giver come into the house gets her up and ready for the bus to take her to day care where she spends 4 hours a day during the week. Mom does not miss a trick, she is very alert to what is going on around here. She is easy to get along with and seems happy in any situation she is in, she is not frightened or uneasy at all. The care giver returns to our house and gets Mom off the bus and stays with her until I get home from work. In the evening it’s just Mom and me, and the 16 year old dog! Mom does not speak much and when she does her words are unrelated, so communication is a problem. She will feed herself maybe 60% of the time, we feed her as well. She doesn’t toilet herself or let us know when she needs to go. She likes Mylar Balloons and folding cloth napkins. She can’t get up from the bed or chair, we have to lift her to a standing position. I have NO idea how I will manage her when she can’t walk anymore. At that point I’m not sure I will be able to manage her at home at all, hate that thought! Any tips on that condition would be greatly appreciated!! We have a lift recliner and a hospital type bed for her. At night I put down a rubber mat beside her bed just in case she tries to get up, I think we are beyond that, but you never know. She has started to put inappropriate items in her mouth, crayons, and parts of stuffed toys. I put together a “work board” for her that sits across the arm rests of her chair, which holds all of her toys and stuff to keep her busy.

Take Care,

@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?

@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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Good morning @macbeth. You bring up an important issue. How to vet any potential help. In the early days of my wife’s caregiving needs, I was still able to work and so we needed a paid care person in our home during those times.

I am sure each area and community is different, but here is what we went through and some of the things I learned.

I give this information only to educate and perhaps forewarn. I am sure there are far more great stories of folks getting great help than what we experienced.

I used a local agency. Our Agency on Aging had a list they shared with me. My wife’s caregiving needs were high demand, so it was challenging to find someone. She needed companion care, not skilled nursing care. Many agencies I called would absolutely not provide transfers during the day, or did not want a patient who was ‘active’ in her daily routine. My mother-in-law had far less problem getting care folks as she was bedridden and unable to communicate, etc. and there were many more folks willing to help a person in her condition than there were who were willing to help my wife in hers.

I went though local, for-profit agencies in the hopes that it would provide ‘back-up’ if a caregiver got sick, called off, etc. I hated the fact I had to pay $25.00 an hour and the person actually doing the work only got about $7.50 of that, but it is the business model they use. All these agencies were franchises and the quality varied greatly! I suggest you review the agency owner as well as the caregivers they send! They promised big, but delivered far less. I also learned, in the case of the seven agencies we went through, they really didn’t investigate/review/train their potential workers.

Be careful! We had many, and I mean MANY, terrible experiences both with agencies over-selling their abilities and we had even more ‘iffy’ caregivers. Some of these people abused my wife emotionally, threatened her, stole from us, extorting my wife, and one resorted to robbing and ransacking our home the day after I fired her for abuse. Some would just not show up, some would come for a day or two and disappear. They sent one who was struggling with mental illness, which they knew but didn’t tell us. She stole and took some of my wife’s medications and had a mental crisis while caring for my wife. My wife had to call 911 to get the cops to come (she was telling my wife her family were all dead and dismembered in our garage), but when the cops arrived they called me too since they said ‘we can’t tell who the crazy one is here and who the patient is.”

Given those kinds of experiences, I was too scared to use Craig’s List, etc. for people but I have been told some folks do and have great results.

I advertised in our local paper (using a PO Box for replies) and only got two responses over three months of advertising. Neither ended up even showing up for their interview.

Our church did not provide any resources for caregiving due to potential liability.

I finally was successful in getting one good care person through a personal recommendation from a nurse at our hospital, who was absolutely wonderful. She was with us the last nine months of my wife’s life and was very, very good. I paid her less than what I had been paying the agencies per hour, ($18 vs. $25) but she got it all and was comfortable with that.

As I said this were only our experiences.

So vet any potential agency, then do it again, and again — then vet the worker they send too, just to be sure you know what you are getting.

Peace and strength.

Wow, @IndianaScott! Although my husband is not yet at that stage, maybe I should start checking things out now! Having worked in the court system for quite a few years, I was afraid of some of this. Thanks for the ‘heads-up’!

@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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Hi @annie33, I’d like to be the first to welcome you to Connect. I merged your message to this discussion thread where people are already discussing caring for family members with Alzheimer’s. I’d like you to meet @IndianaScott and many others who may be able to share their experiences with you.

Liked by ladycat

@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!

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.

@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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Alzheimers takes away from your memories not just short term but long term as well. It also takes away the memories of body function, With that said for these patience when he clings to an item like the chair or apartment and has to leave it they panic becoming fearful of losing someone thing that they feel safe in. There is unfortunately no medicine that can prevent this. The best thing to do for his mental state is to make changes slowly and with your assurances that everything will be alright. As he loses memories he will be clinging onto you for security. So be patient. Stay with this group so you will get the support that you need. You are terrific to be holding on like you are and caring

@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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@macbeth – it sounds like you are casting a wide net – which is necessary! We live in a large city and I know there are lots of resources available to us that may not be available in other places. I decided to start with an independent agency since my husband’s needs at this time are really focused on companionship (and respite for me) rather than physical health support. I’m slowly learning what is and is not available to us at this stage of his illness — I’ve been in touch with our County government that has a public health group providing mainly educational support as well as one of our area’s qualified Home Health Services group. The Home Health group provides nursing care along with occupational therapy, social services, etc — their program has some specific requirements and are funded by Medicare. I have not talked with the VA… yet but know some folks have had great success with them. Frankly, figuring all of this out gets to be a lot of effort while also trying to be the primary care giver! …. which takes me back to one of my earlier posts … the hospice model of full service care is a good one that I wish were in effect for people like my husband…..

Also, a personal challenge we are facing is that my husband sometimes does not recognize the need for additional support here at our home — he flips back and forth between asking “why is she coming? why is she here?” to “is she coming today? are you getting help today? when is she coming?” His cooperation in receiving care and trusting additional care from someone is unpredictable due to the dementia — I’ve learned that we simply must gently power through since I need the additional care!

@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!!

@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.

Liked by macbeth

@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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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.

@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!

Liked by ladycat

@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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