Caring for loved ones at home?

[agoyer]

Are any of you caring for loved ones in their homes? What are your stories - joys and challenges? 

I'm caregiving for my Dad at home - he lives with me. He's 92 and has Alzheimer's disease. My sister and my two nephews also live with us, and my Dad's service dog (who is my best friend!) who is fighting cancer! It's a 3-ring circus but I love it and wouldn't have it any other way! I wrote a column with some tips that might be helpful to you:  Tips for Caring for Loved Ones at Home.

Here's a pic of Daddy and me at Starbucks recently!

Post your tips here and we can all share what we've learned!

[jasmardavis]

What about when your daughter moves her husband and son in my home , and tries to take over like its her house? Its a cruel world. I had my physical in June and I'm healthy. Dr. Said I needed to get back on track at the "Y". Im doing that now .  I had other grandchild issues so I wasn't hitting the gym. Now Im going the the gym just to stay away from argueing with my daughter. I loaned them $10,000.00 for a business adventure. Well, that was a bust or a lie just to get the money to pay for 2 MERCEDES cars. So they could move in and take my house. She wants to put me in a nurseing home. 

[agoyer]

@jasmardavis It sounds like you are in such a tough position - I'm so sorry for the stress and heartbreak you are experiencing. @JaneCares had some very good thoughts for you, I might just add that if you don't know someone who who might help mediate a conversation, there are eldercare or family mediators who have a great deal of experience helping families mediate situations like this. You can find an eldercare mediator by contacting your state bar association, asking for a referral from the area agency on aging (AAA) - you can go to the Eldercare Locator to find your local AAA, or searching online or in the mediate.com mediator directory. 

Keep us posted! 

Take care,

Amy Goyer, AARP Family & Caregiving Expert

Author, Juggling Life, Work and Caregiving and

Color Your Way Content When Caring for Loved Ones

[JaneCares]

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@jasmardavis wrote:

What about when your daughter moves her husband and son in my home , and tries to take over like its her house? Its a cruel world. I had my physical in June and I'm healthy. Dr. Said I needed to get back on track at the "Y". Im doing that now .  I had other grandchild issues so I wasn't hitting the gym. Now Im going the the gym just to stay away from argueing with my daughter. I loaned them $10,000.00 for a business adventure. Well, that was a bust or a lie just to get the money to pay for 2 MERCEDES cars. So they could move in and take my house. She wants to put me in a nurseing home. 

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Wow, that's awful, @jasmardavis! Gracious!  Good for you for getting to the gym: it helps you in dozens of ways!  Meanwhile I'm wondering why your daughter thinks she can move in and take over your house? She's not on the title, is she? You still own it, right? She really has some nerve! To take your money for one purpose and then buy 2 mercedes???

Do you have other adult children who can come to your defense? Have a family gathering. Then everyone sit down and start talking about 'planning for the future,'  as in," so, daughter, you and your husband and son have moved in. This is temporary, right? What's your next step??"  Have the other adult children ask them what their plans are. The idea is that everyone in the room except your daughter assumes her moving in is TEMPORARY.

If you don't have other children or they won't get behind you to support you, is there anyone else who could mediate? Like a pastor? Your pastor? Bring him or her over for lunch some weekend day and then ask the pastor to talk to the daughter. 

I'd keep going to the gym, and fighting for your turf, even though it's now reduced, but its still your kitchen , your bedroom, your home.

tell us more? 

Jane

[2flowers]

I would like to know if you are caregiving for family member are you qualified to be compensated in Georgia if the family member has Medicaid. Thank you

[GailL1]

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Joey@2flowers wrote:

I would like to know if you are caregiving for family member are you qualified to be compensated in Georgia if the family member has Medicaid. Thank you

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It is not normally that way in GA - there has to be some extenuating circumstances for this to happen.

This should answer your question - CCSP stands for "Community Care Service Program "

GA. Medicaid Elderly & Disabled Waiver - CCSP

If you think an extenuating circumstances applies, contact the Georgia  government division described in the above info.

[andyz867798]

Totally Misunderstood.

[GailL1]

@andyz867798

Is this a joke ??

Why did you move into her home in the 1st place if not for caregiving - that means giving care.

If she only had a problem with driving after she LOST SOME OF HER VISION, she could could have just called a taxi.

Who takes her to her Dr. Appointments?

If I were her - I would ask you to leave and just ask for help from somebody else.

Sounds like you are boarders, not caregivers - 

[CatherineG621442]

totally misunderstood

[andyz867798]

There is no way I can explain every detail of our situation in this artical. You nor anyone else has any idea how our day to day is going with my mother-in-law. She can't live alone, she can't see how to read her mail, her precriptions, she can't open the milk container by herself, she can't even see derections on food container and how to cook them she has limitions due to her pace maker and other health problems. I ONLY ask her to do things like dust as a promoter to get her up out of her chair and to move a little, I don't care if she actually dust or not. I don't need ask her help because I want help doing housework, I am perfect happy doing it myself. I care for her every need and enjoy doing so. But she went into depresstion when she learned she was loosing her eye sight and then it changed into anger and now it's made her give up on everything in her life. We ONLY want what is best for her and she loves us and wants us here. She has thought many times that we might leave and has always told us she didn't want us to leave that she wanted us here and needed us. BUT MY POINT is this....our being here has caused her to go into a state of mind "SPOIL ME" rather than "CARE FOR ME. That and only that is what I am seeking answers for, While she sits inactive her heath deterierates. Her son, my husband takes her to all her apointments, because I also have my own mother and father and uncle that I care for and take to apointments. I was in hope of getting advice not criticism.

[JaneCares]

Hey Andy,

Your posts have gotten responses of support, and it's been many months since you first wrote. I'm wondering how things are going now. Sounds like your husband and you have been trying to help your mother in law, and she was very sad, very discouraged, back in May when you described your situation. I also understand that you have your own relatives to worry about, as well. 

Any update for us? We all learn from each other. 

What i read into your posts from months ago was also some exasperation and resentment. Your mother in law was asking for more assistance, more tending to, and not doing much to help herself, and you perceived that she was acting entitled, as though she were a grumpy princess, and you two at her beck and call. 

Some people get depressed as they lose their independence, and becoming blind is a whopper. Doesn't mean that she has a right to treat you like a bellhop. But, there are antidepressants, there are strategies and ideas that help people adjust to the least fun aspects of aging and loss. And you need to care for YOU, and for your marriage, as you yourself get older, right? Put the oxygen mask on yourself first. 

Anyway, i would love to hear what's happening now. I think perhaps folks were reacting a little bit to the anger in your first post. It's okay to be angry. Help us out, and teach us all how things have evolved since May, if you choose. 

And all the best, regardless,

Jane

[YolandaE903594]

I can totally understand you asking for no criticism. I find myself really upset about people offering opinions and criticisms but no help. Anyhow all I can is that I vent very often with anyone who listens. I ended up being a "go to " person when it comes to caregiving. God bless you and your family. 

[a182295m]

Hello and God Bless you for all you do for your love ones. If the person that is criticizing you and your work for your love one. They should think before they speak if they are not contributing any fund nor lending a helping hand to you should not speak out of terms. I have done care giving for years and it is not easy. It upset me to hear the thing that comes out of their mouth. Please you do you and take care of your love ones. That is a blessing all to it self. But remember one day they will get old and need someone I hope they can remember what they are saying when it comes to their term being a elder person.

[GailL1]

@YolandaE903594

@CatherineG621442

If you both are responding to the post made by @andyz867798 - to which I responded to - Please understand that @andyz867798 deleted the post which made it sound like a boarder situation rather than a caregiving situation.  Then @andyz867798 reposted, modifying their original thoughts and phrased it as asking rather than telling.

Personally, I believe that a caregiver gives care.  They don't decide when a pretty much or totally blind person should do some aspects of housecleaning just because the in-house care person may think it would make them feel better mentally or physically.

Caregiving has little to do with "spoiling them" - A caregiver does everything for them which they can which the person cannot do for themselves.  It really isn't the caregivers responsibility to diagnosis or treat whatever they think might be a person's problem - mentally or physically - without consulting a health professional 1st because the person needing care has limitations, perhaps both physical and mental, some of which might need outside professional help.

[s828305b]

This can be one of the most stressful things you will ever do. It can bring overwhelming feelings of joy as well as feelings of helplessness. "It is common for family caregivers to present feelings of guilt, anger, sadness, tiredness, anxiety and despair, as they often carry out activities without adequate guidance or support; when added to the demands on economic resources, family or personal organization, distress, conflicts and the accumulation of tasks, among others, this can create burden" (Nardi et al). Reach out for help as soon as any of these things happen. There are resources like respite care, asking family to help, adult day care. You need to make sure you take care of you so that you can continue to care for your dad.

Nardi, E., Sawada, N., & Santos, J. (2013). The association between the functional incapacity of the older adult and the family caregiver's burden. Revista Latino-americana De Enfermagem, 21(5), 1096-103.

[miked767946]

You are a Very caring Human Being,and Never forget that !!! I  too care for a family member. It's not easy,but I would'nt have it any other way!!!

[anncamp91406]

great picture, thanks for sharing

[anncamp91406]

I too care for my mom who is almost 94 & until about 4 years ago cared for dad as well. 

Although it's the hardest job in the world it is also the most rewarding job in the world.  

The way way I look at it is they gave to me all my life & I think it's fair to say I was no joy all the time but they never gave up or tried to send me away & I feel honored to give them back just a little of what they gave me. 

I would like to thank all those HARD WORKING FAMILY CAREGIVERS who give so much of themselves every day & give so much unconditionally!!!

[KellyH975732]

I also cared for both of my parents and was with them when they died. I felt honored that I was able to be there with them during that time. As a nurse, I have seen many without families and it is very heartbreaking. I thanked my parents for giving me the opportunity to show them how much I loved them and for allowing me to care for them during their last few days. When they each passed, I felt a deep satisfaction knowing that I did my best in caring for them, because I love them so much.

[agoyer]

@KellyH975732 It sounds like you really embraced the opportunity to care for your parents. That's how I've felt about it too. Caregiving for loved ones is so clearly is love in action. When the chips are down, those of us who step up to care for others are living a life of service and love. That's what really matters in my opinion. 

Thank you for caring for your parents and for caring for so many others as a nurse - I'm sure you've had a more sensitive approach with other family caregivers since you've been one yourself! 

I first posted this about 2 years ago - here's an updated photo of my Daddy taken a few weeks ago 🙂 Daddy had just said "Love you, Love you" to me 🙂

[DMLKCrane56]

I to cared for my physically challenged sister who was a year older, for 30 yrs. No one told me that their was available pay while caring for her raising my 2 children and her on my own earning $5.00 an hour. Have no remorse for doing it either with 5 other siblings not offering to help out, 2 did take her to use her for babysitter other for maid. She passed last Jan, 2017. I felt like I lost my child even though she was my sister. Just heads up make sure you have guardianship when they have a mind that cannot say what they want, DHS deemed her own state of mind when actually did not know difference if she had a dollar or ten dollars she just knew she had money. thought she was going to work at facility
within month she told me she wanted family and until they knew she was failing then DHS decided send her home to a nursing facility. Her diabetes was never extreme, caught pneumonia within 60 days hospitalized could not take glucose testing on own, but kept her in facility that was not what she needed.

[Jlincoln008]

 Do your homework when hiring paid caregivers. It's wonderful to have help, and there are many caring and dedicated people willing to provide it. But, of course, there are others who are not so reliable: My mom had several falls due to untrained paid caregivers, and one even stole her jewelry. When hiring paid caregivers, be sure to do background checks and get references, and carefully monitor their work. Stop by — preferably at unexpected times — to check in on any professionals or volunteers going to the home.

________________________

Really useful tips. Thank you, Ms Goyer.

I have a question about the above. I have told my clients over the years that there are basically 2 choices. One is to hire an aide through an agency and the other to hire an aide who works for his or her self, through word of mouth. There are pros and cons to each. The agency will take responsibility if there is a 'no show' or sickness on the part of the aide, and will follow up and fire the aide if there is theft. It's the AGENCY that does the background check, and also the training. The agency does the heavy lifting for adequacy, cultural competence, etc.

For word of mouth referrals, clients can find excellent caregivers, and the cost is usually significantly less than agency. Quality varies. 

For word of mouth, i think it makes a lot of sense to get references, but that's a hassle, too. My clients, when i was a geriatric care manager, and my patients, when i was a hospice social worker, did not want to take the time if they didn't have to.

What do you think? You're obviously in the trenches of caregiving. Do you have hired help now? Can you describe how it's working, or not? Do you use respite care services? I used to work in Maryland, and the Respite Care program was great, but limited in what it would pay a family to pay for 'respite' care, and the program money almost always ran out before the end of the fiscal year... argh...

You have such a wealth of experience. Thank you for sharing it. You are a generous person.

Jane

[agoyer]

Hi Jane, 

I do include some paid caregivers on my caregiving team because I work and travel and I can't do all the care myself. I have used agencies and had both good and bad experiences - in my experience a lot of it depends on the agency, its' standards and how it's run. Currently, I hire caregivers directly. One is my sister and she is paid the same as the other caregivers since she spends so much time caring for Daddy she can't handle another job. The others I've hired directly. I find most via websites like Care.com and I have found a few via word of mouth. Even though I have to check references and do background checks, some websites make that easy for you, and it's worth the effort for me because I seem to have a better experience overall.  There are also different models that are somewhat in between hiring directly and using an agency - like Carelinx.com or CaregiversDirect.com.  Regarding respite, my Dad is a veteran and I've been trying to set up the free respite care he's entitled to from Veterans Affairs for about 2 years. I get so far and then the agencies VA contracts with are hard to work with and get people lined up when we need them, then I give up for awhile and then I try again. Right now I'm in the process of working with an agency that seems better but we still don't have someone scheduled. I'll keep you posted!

[Jlincoln008]

thank you, Amy. There is a lot to be said for doing your own reference checks, and hiring folks directly.  I'm glad you have a stable situation at the moment.

The VA business is really hard, or so I've found. The Aid and Attendance paperwork is onerous. I worked with an ALS vet once, and found out that ALS is considered a combat injury. He got an aide for 2 hours 3 days a week, which wasn't much, but it helped some. He was on hospice with my team, and also followed by the VA. Complicated schedule. His wife worked very hard just keeping the schedule organized.

You've been in the trenches of caregiving for a long time. Your expertise is hard earned and so helpful.

Jane

[JudyW66506]

the VA is useless as far as helping people I have been working on a pension case for my mother for over a year and a half 4 times I have been misled about the paperwork that I needed to provide she's just gotten turn down again for the second time and told that I have to prove that her rent at the retirement place isn't that just rent and she needs to stay there for medical reasons originally I was told we needed a letter from her doctor stating she was not able to live alone this was what the VA employee told me that's not what I needed I needed a letter stating she had to stay in a protected environment and she had to stay where she was because of medical reasons I wasn't told this until you were turn down for the second time here's a word don't even waste your time with these people it's very clear to me that their job is to turn down everybody and drag it out as long as they can now because of this circumstance I have to bring my 91 year-old mother with dementia home with me she can no longer stay where she's been for the last two years and is entirely happy there the VA is nothing but a ton of paperwork with no reward at the end. The other time I was instructed to fax to the Lockport office the paperwork after the first time she was turned down on the fax cover letter I specifically said please call me if there's anything else you need I did not receive a phone call so I assumed which we both know what that means that everything was fine 3 months later I decided to call the VA much to my anger I found out they never received anything!!

[GailL1]

@JudyW66506 

You might try going through a VSO representative (Veteran Service Organization).

They are expert at muddling through all the VA paperwork and are knowledgeable about all their programs, benefits and eligibility requirements.

Their services are free unless there is some incidental which they may have to have, like a military record and then any charge is minimal.  They are NOT like accredited lawyers who work on legal matters.  VSO representatives just help you work thru and within the system - they know the paperwork, what you need and where everything to do with the claim is located.

Just make sure you use an Accredited one - there is a list on the VA website -

I have used the DAV (Disabled American Veterans) and the VFW (Veterans of Foreign  Wars) for Veteran Claims - there maybe some that are more specialized in claim filings for spouses and dependent - ask them.

VA Benefits.gov - Accredited Representatives - Veteran Service Organizations

I came back to add if you are trying to get '"Aid and Attendance" it is difficult if your mother is not the actual Veteran - seems they purposely make it confusing and I think the income eligibility for it floats rather than being a stationary income number.  It is much easier for the actual Veteran although no impossible for the spouse of a deceased eligible veteran.  

[agoyer]

@JudyW66506 I can totaly understandand and empathize with your frustration! It took us a year to get my Dad's Aid and Attendance benefits set up. Here's what made all the difference for us though - his elderlaw attorney helped - really led - us through the process. There was still a lot of back and forth and they always wanted more information, but with the lawyer it was a buffer and they had a lot of experience with it and also they had contacts at the VA office they worked with regularly. Which helped. I agree with you that the the VA is dificult to work with but I have to say that I really urge you to get help and stick with it. In the end my Dad got more than $2000 a month  to help pay fo rhis care (he was a WWII and Korea veteran and he had Alzheimers). That help was crucial. The lawyer did not charge us for help (they cannot charge for that) and there are also other Veterans Service Organizations (VSOs) that can help. Click HERE is my AARP article about Veterans benefits with some links that can be helpful! 

The whole process with VA  health care benefits was also very arduous, and I gave up once but went back to it eventually and in the end it was 100% worth it, as we eventually got help every day with somone to come and help get Daddy out of bed, bathed, dressed etc,  plus we got addtional respite care (about 6 hours in a chunk almost every other week), and we got home-based primary care  -= which made ALL the difference, and once we were in that we got the social worker and others to come directly to the house and THEY helped us get through all of the other red tape - invaluable! 

So overall - I agree it's a process that shjouldn't be so hard and long. But for what it's worth, it was all completely worth it becuase the help we got (and ramps and medical equipment) were SO helpful! 

I hope this is encouraging for you! Let me know if I can be of help!

Take care,

Amy Goyer, AARP Family & Caregiving Expert

Author, Juggling Life, Work and Caregiving and

Color Your Way Content When Caring for Loved Ones