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.

@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!

Liked by ladycat

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@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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@tsoy Super! Thank you!

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

Liked by ladycat

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

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@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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@tsoy Oh my gosh! Thank you so much for the leads!

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Fibbing can be helpful depending on stage. EXample; Your car is in the shop. The people in the house are helping me prepare it to paint, carpet. Etc…..you might have a friend that needs to stay with you until repairs are made on her flooded house and she is repaying you and your loved ones generosity by helping around the house. And you will be glad when she can go back home too. But now she needs our help. There is no end to helpful fibbing even though it might be only useful short term, even moments. When wanting to eat too often you might try dinner is in the oven, or you are waiting for the pizza man to deliver. My mom would brush cob webs from the house if I began to and asked her to take over for me while I had to tend to something else. Raking leaves is harmless too if secure from street. She would sometimes stay busy with it for awhile, giving her a bit of exercise. Music on a radio while outside may help them feel more connected to surroundings. When possible pick up lunch to go and save to heat up for dinner as lunch is much cheaper.Pastas, Thai, Chinese food reheat well. This will take some pressure off of caregiver and give some variety to all. I always agree and never say don’t you remember? I’ll see what I can do might interrupt the thought they are stuck on. This is a long, slow slog with few signposts. What works today probably won’t work long.
Aside from this I just learned that depending on what state you live in, should you reach a point you need to have loved one move to care facility although after spending down to qualify the gov can recover what it spent on their care from estate after death. This started in 2009 I believe and is a change from how it used to be handled. Hope this helps@@

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@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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I am dealing with caregiving for my husband who has Parkinson’s and dementia. I had the same problems with caregivers when I was hospitalized due to a heart attach. The people the agency sent (I was arranging for care for him from the hospital as we have no family in the area). They sent young, inexperienced people who would bring my husband to visit me for ten minutes and then when they left tell him they had to take them out to dinner and buy them cologne. Like you, my church was of no help. I finally found one caregiver who was great but after about six weeks she decided she didn’t want to do that anymore. My husband is now in a skilled nursing facility after an unexpected hospitalization in a town 500 miles from where we live. I wish you the best of luck but if you find a way to find a good in home care giver, please share it. I’m scared, alone and at my wits end because I want my hubby at home where I can make sure he is cared for.

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@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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@tntredhead. Oh my gosh! How awful, and how scary! I’m so sorry about your circumstances, and hope you are able to move your husband back home soon.

I have not yet been able to begin to check on in-home care. My husband has had out-of-town medical appointments scheduled for yesterday and today, and that has taken up the day yesterday, and will today, too. I will try to share whatever I learn when I do learn anything. I’m saving my questions for the VA, until his next appointment, late next month, but may begin to look around locally yet this week. There’s just so much to do every day. It’s constant. But, I will share whatever and whenever I am able.

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@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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Hi @tntredhead! Good to get to e-know you here. I wish you the best with your husband, his care, and your care too! You are indeed plowing a tough row right now!

It makes me sad (and angry) to read the fact others have had, or are having, some of the same experiences my wife and I did with her caregivers. I believe someone is selling a very faulty business model for caregiving ‘companies’! Someday I should sit in on one of their sales pitches and see how much they emphasize the need to be providing crucial services for families in need of a crucial service and how much they are selling profit potential!

If you have a hospice organization in your hometown, or one that serves your hometown, perhaps they might have some suggestions of aides or CNAs who are available for work. Or ours at least had a comprehensive list of service providers.

Peace and strength!

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@macbeth

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’!

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@macbeth — it might be worthwhile to at least do a bit of a review of some of the local agencies. Checking the BBB ratings, etc. when it is not crunch time.

Peace

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@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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Thank you so much. I am glad to have a response.

Liked by ladycat

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@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, It is amazing how Dr’s are isn’t it. Marcel’s dr, didn’t start him on any meds either so he decided to sign himself into a dementia ward, he was there three weeks but when he came out he is on some good meds which has helped him so much and thus have helped me too. We have never been around anyone with dementia and sometimes I feel like I am in a little boat in the middle of an ocean and I don’t know what to do. His daughter is wonderful and I don’t know what I would do without her. Your idea about your wife worrying about what the dr might tell you is a god one. I am going to try to find out if something like that is going on with him. I will let you know. Thank you

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@kmkm

Hello- I don’t get out much and am looking for an online community of caregivers who are at home full-time caring for a parent with Alzheimers. I’d love to swap suggestions and ideas. Is there anyone out there? Thanks.

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@nanax2 how do you deal, cope with your bedridden Mom? My Mom can still walk with someone holding her hands and walking backwards in front of her, well she really scuffles her feet slowly. Her gait is VERY slow and her balance is very BAD. I worry I will not be able to handle her at home anymore by myself when she is no longer able to walk at all. I mean How would I get her out of bed to bathroom to living room and back again? Will she have to remain in bed all the time? How can one person change her? Got any pointers?

Thanks and hang in there

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@kmkm

Hello- I don’t get out much and am looking for an online community of caregivers who are at home full-time caring for a parent with Alzheimers. I’d love to swap suggestions and ideas. Is there anyone out there? Thanks.

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Hi @tsoy. I hope your day today dawns an OK one!

My wife lost her mobility for almost the last year and a half of her fight. I will say it changed fast and was something she fought hard against, but finally she could only go from bed to wheelchair, then just bed.

In the beginning I could manage one-person transfers with her from bed to chair, but then after awhile that was simply not possible so it would only work with two-person transfers. She did not like them, but she accepted them so she could be in her chair for some of the day.

I learned a lot about how to care for someone in bed all the time. How to change the bed with her in it, how to ‘modify’ a couple of her old gowns (I had to cut them up the back), hairwashing, how to change her diaper (we always were sure to call them her ‘briefs’) on my own, and a few others. Necessity is the mother of invention and while my efforts were often just jerry-rigged, they worked for her.

When you want any specific hints let me know.

Peace and strength!

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