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I'd like to put together some information to help new family caregivers. Here are a few questions for everyone:

What would have helped you most in your role as caregiver?
What would you have changed to make your "job" easier?
What advice/tips would you give to a new family caregiver?

Thanks in advance. I really appreciate your input.


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Hi Mike, sorry for taking a while to come back to you but I really had to give your question some serious thought, as in separate some of the more emotional baggage from the practical view.   I tend to waffle on a bit so I'll try to hold myself back a bit for this one.

1.  What would have helped me most, looking back, would have been:
  • a practical training course on how to lift someone so that I wouldn't have ruined my back,
  • more accessible information on the day to day ailments and needs of elderly people, as in skin care and toileting difficulties,
  • more compassionate pharmacists, nurses and doctors, ones who wouldn't assume that I'd been doing this for years and "should know better" about every single thing,
  • and finally, frankly, a crystal ball.
2.   What would I have changed to make the role easier?
  • Instead of allowing myself to drift into the role just because I lived in the same house, I should have insisted on regular family chats so that everyone was up to speed on how things actually were; just soldiering on for nearly 3 years without any help at all, from anyone, nearly broke me.
  • I should have found a way to be legally entitled to at least hear as much as my Dad did from his medical team about his various conditions, medications, expectations, procedures etc., rather than be at the mercy of an elderly, forgetful, difficult man, doling out titbits of information to me as and when he felt like it.   Honestly, it's be held responsible for the welfare of someone else while you're kept out of the communication loop, blind-folded and hog-tied. 
3.   The best advice and/or tips I'd offer to a new caregiver would be:
  • Before you commit yourself and sign on the dotted line, make it top priority to find someone, not family, who has been doing what you're thinking of doing, for quite some time.   The smiling, hugging, flower-filled photographs of carers and their "patients" are a long way away from what really happens.   That's not to say there are no happy occasions but there are far more situations where the gruelling, drudgery and thankless, back-breaking misery of it all will reduce you to tears instead.   I simply had no idea what was in store for me; I'm not saying that I wouldn't have taken care of my Dad if I'd known but I don't think I would have ended up feeling quite so "ripped off" if I'd had a clearer idea of what to expect.
  • If there are siblings, make them aware and then make them involved and then make them roll their sleeves up, whatever it takes.   There's no glory involved in being the one who does it all, it just makes you bitter, resentful and old before your time and they won't appreciate you for it, despite all the pats on the back and all the "I don't know how you do it, I know I couldn't" because it's all empty claptrap and if you end up keeling over because of it all, they WILL have to do it after all.
  • Try your damndest to keep your job, if you're the designated carer and have siblings, they will be keeping theirs and they will be keeping their holidays and their evenings out and their week-ends away and their hobbies ...............and their sanity.   You will enjoy none of those things because they may be gone entirely and they may have taken your future with them.
I hope I have been of some help and haven't strayed too far off the point and I fully realise that my opinions on caring are very warped but it has happened to me so it could easily happen again.

Take care for now,
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What would have helped you most in your role as caregiver?

To have had the representatives with whatever ‘agency’ that I have dealt with to explain things to me as the ‘dummy’ that I was in the beginning of my role as caregiver for my parent(s).  And for these reps to have explained what I should expect with future dealings, i.e. the next steps in those processes.  This would have saved me the following: many unnecessary phone calls, my having to ask many extra questions due to my lack of understanding, extra miles traveled all the added stress, etc., etc. 

A couple of examples:


1) It would have been ‘nice’ if the representative with the Social Security Admin. Office (closest one to me is 50 miles) had found it within her job duty description to tell me (when I called ahead before going there) that they close at 3 p.m. daily AND that I would benefit from making an appointment.  Then I would not have gone there one day to find them closed and again the next day to find that it was best to have an appt., therefore having to wait over an hour for assistance (I wasn’t going to budge that day!!).  Luckily, the gentleman that assisted me explained things well and told me what to expect as things progressed.  This was the day that I visited the SS office to tell them that Mom had gone into a nursing home, change her address, and enact myself as her representative payee.


2)  Seven years ago my 80 some yr. old Mother and I went to our initial appointment with the Medicaid case worker.  We both came away from that appt. feeling as though we were in a completely dumbfounded fog.  Having been given that much information in one sitting anyone would feel as we did.  However, in addition to the fact that no one could expect to understand it all right off the bat, it was obvious that the case-worker was tired of having to explain and/or unable to explain in layman’s terms the process (which we so desperately needed).  As the process progressed, this poor communication on the rep’s part left us with-- many instances where we had no clue as to whether we were doing things correctly or even on time; worried and scared that we could get into some kind of legal trouble with the state due to our ignorance; being afraid to but having to make many phone calls to her to ask ‘dumb’ questions that were answered by her in her usual poor and ineffectual manner.  Luckily, after several years of ‘exposure and practice’ things with the Medicaid process have worked out fine, but only with much unnecessary stress!  

Trust me, I’m a 25 yr. RN/veteran of the medical field, and I know how tired and frustrating the Medicare, Medicaid and medical systems are to work for or with.  But we don’t do anyone or any process justice by not caring enough to make sure things are clear right from the beginning and helping our patients and clients to plan ahead.


3)  I feel it would be much more efficient when one goes to the Soc. Sec. Admin. to inform them of any mandated changes, if all agencies connected to Social Security/Medicare would be alerted (by THEM or their system) of the changes as well.  I mean, come on, all it takes is a universal computed system, duh.  

For example, what I have had to go through with Medicare Part D just to change Mom's address to her nursing home address has been completely ridiculous (especially when I have every form of power of atty., am her rep. payee, and have been co-owner on all of her accounts for a long time, and the nursing home and pharmacy are the only ones actually touching her medications.  I really want to cuss right now!!!).  Ideally, I wanted all of her mail to come directly to my address but nooooooooo, that would have been even more difficult.



What would you have changed to make your "job" easier?


See above!!!



1) When parents become unable to care for themselves their children should not be able to fully’ divorce’ themselves from the situation and leave another sibling to do it all.


It appears to me that filial laws are designed to even punish the actual caregivers (when the caregiver just can’t do it anymore). I’ve not been affected adversely by these laws other than the looming threat that no matter how exhausted and ruined I became I had to keep being it ‘ALL’ for my mother.  These laws should be designed to be protective of actual caregivers and force any able-minded and able-bodied siblings to at least take on portions of the task.  The presence of and awareness of this re-designed type of law that mandates all children in a family to do their parts for their parents would help with many aspects.  I realize what it is like to have a parent that makes her child’s life unbearable when it comes to being a caregiver.  I know what it is like to have siblings that are hands-off where helping is concerned.  Based on that experience I don’t believe that adult children should be able to make one sibling shoulder it all or even most of it when the going gets tough and the elderly parent can no longer be responsible for themselves.  If, for justifiable reasons, it is impossible for a child to be physically around the parent there are many other things that they can do as part of the family team so that each caregiver can survive much more intact.


2)  There has long been something that I have found to be a complete wrong-doing (should have been against the law) by insurance companies.  Long ago people bought long-term care policies only to find that now these policies do not actually cover an assisted living.  Two points to consider—1) Medicaid considers an assisted living to be ‘long-term care’ and 2) nursing home care is much more expensive than assisted living care. 

This is one more affront to consumers allowed the insurance companies.  This should have been regulated by law as this refusal by insurance companies to pay for assisted living was taking place.



I will share my thoughts on Mr. Gamble's next question later after I’ve had time to think about it and put it together.  Right now the brain is drained!  And now I must go on with continued/never-ending arrangements to fully become my mother’s representative… even when years ago we enacted the powers of attorney (medical and durable), and had me co-sign on her accounts.  Sheesh!


I hope someone can benefit from this.  It's been a good vent[mad][smile].   Please, forgive my grammar and punctuation... being good a these has never been my forte’!

Imokyurok =)





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A. - I'm ok
Superb thoughts, I'm ok and you can add that same red tape mess on vet benefits to for vet pension or widow's benefits.
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Third Sister

I've been thinking for days about your proposal of making all adult siblings equally responsible legally for a dependent parent.  I  have to say I'm of two minds about it.

On one hand, I'm the sibling that's been left holding the bag where my mother is concerned, and I deeply resent that my siblings are all going on with their lives as before without the slightest thought that they should take any responsibility or even acknowledge the sacrifices I've made. On the other hand, if the law were to try to hold me legally responsible for a parent (my father, in this case) that I chose to divorce myself from, I would be infuriated. If one or more of my siblings chose to take care of my father, I still wouldn't feel obligated to help out.  I would feel that that was their (foolish) decision, but I would have no part in it.  Luckily my father is deceased so this has not been an issue.

That being said, I wish I could go back and do this whole eldercare thing differently.  I wish I could have sat down with all my siblings and reached a consensus as to what we, in the aggregate, were willing to do for Mom, and then set about dividing the responsibilities according to each sibling's abilities and availability.  This "everyone for him/herself" approach usually ends up a disaster for somebody, in this case me.

Unfortunately, my siblings virtually never get all together in a group (even at my mother's 80th birthday party, two siblings were MIA), and anyway parents' needs just don't evolve in a predictable fashion where you could divide them up in advance. 

I think more than a change in the laws, we need a wider cultural understanding that caregiving is hard work and that it profoundly affects the quality of life of the caregiver, and that even if the caregiver accepts the role willingly, it often evolves into something way beyond what the person envisioned or ever would have agreed to.  We need people to realize that they shouldn't expect more from a sibling than they would be willing to do themselves, and if a sibling is taking on more than his/her share of the load, the balance needs to be changed. Far too many people think that if a sibling is stepping up, that lets them off the hook, and never seem to feel they owe any recognition or appreciation to the sibling who's doing everyone's share of the work.   I agree, it's just flat-out wrong.  If I could figure out any good way of changing it, I'd have already changed it in my own life.

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A-to 3rd sister
What helped in my family some was my not biting tongue and telling my sib off and parent too demanding they do more and they helped some with time. But yes, they always tried to minimize what I did. Now mother is out of state with a different sibling. But I never moved the parent in with me and didn't let them control me.
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-that should read that my parent told the lazy sib off too

and I kept boundaries with parent and said no many times
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I am not unhappy that I kept my parents out of NHs and that my mother had a beautiful death at home, but in general I am angry with myself for sacrificing myself, something neither of my parents did.

Knowing what I know now I would not do it again and I would never encourage any one to do it. You have nothing to gain from a decade or more of caregiving, unfortunately you have everything to lose, specifically your own future, especially in the USA.

Sadly after the caregiving is over, you are old yourself and the time you put in to your parents can never be recouped. Employers are not impressed by your commitment to your family so do not think for a minute you can easily return to the work force, work full time and get benefits. It might as well be the 1880s, because you are an anachronism, a fossil, a museum specimen.

The Ellen Show isn't going to call you and make you over. There is no one to guide you back into the world of the living.

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Third Sister
I'm with you, Equality.  I would not do it again and I would not encourage anyone else to do it.  The fact that society actually still demands and expects this sacrifice seems outrageous to me.  But it also doesn't seem likely to change anytime soon.  The best we can do is save ourselves, to whatever extent we can.  I wish there were a better way.
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This is an interesting question, as I have just had a wild 4 year ride with my Mom (imagine similar bizarre situations, stress, hard not to be depressed) - about 6 fractures now, alzheimer's, a crazy boyfriend, finance issues, family non involvement, etc.). Now, my dad, approaching 90 is providing a lot of new care requirements. Not accepting any help, hasn't washed in over a year, can't stay in his house it smells so bad, etc.

The details would make most people squirm and in any case I really don't have anyone to share the details with - most peoples' eyes just glaze over when they hear it coming. I now know: 1/I will not be able to predict the suffering and disasters that could lay ahead, 2/I will not know how long they will go on, and 3/I'm pretty much alone in this, and 4/I know I will do it and most importantly, 5/I know I want to do it, because I love my mom and dad - even though my dad is not likable and both of them can be mean sometimes.

Knowing my Mom's care is ongoing and that Dad's is starting and probably ongoing - I've decided to try and relax more. This is my last good 20 years or so. I need to find the joy in my life, while I'm doing this. Non-stop worry, not sleeping, and having the stressed chemicals in my body non-stop does no one any good. It won't fix or change anything. I need to make sure I have a job and can survive. I need and want to love my life - have things to look forward to and have peer relationships. I know it's a cliche to say "caregivers need to take of themselves" - but true!  It's sad to see someone's life become smaller, confusing, and ugly in many ways - especially if you love them. This is the hardest part and I am going to do things like journal and read to learn strategies to be loving, and love my own life, during this process. Part of the difficulty is that it opens the window on my own mortality. I will use this work and time to live my own life with appreciation and zeal.
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I want caregivers for my family.Please someone help me .
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Hey..Can you help me please?
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I, myself was in a similar situation as yours caregivier to caregiver. I dealt with the Alzheimer's association. I don't know what I would of done without them. My step dad had the dementia/Alzheimer's and the best thing we could do was place him in the nursing home. He was 81 when he passed. He was there two in a half years. The only real time I could get close to him since April of 1967. He was always doing these circle a words watching TV ectera. It never keeps it away. He needed. 24 hour care and it was the best thing for him. We hired someone to be there with him when we could not at the nursing home. He got three times a day food nutrition and quality care . I am glad he went there because he was sick and falling everywhere. We did not want him to get hurt. About being a caregiver and no one is there for you is absolutely right. Somehow people think you or we never need help. We do it all. Not true when a caregiver may need a caregiver. Sometimes couniling helps us with the grief of living alone and no one there for us. You are at challenge when it comes to us needing help. Hope this helps and remember you are important . Don't ever give up!!
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This is my third time care giving. My brother and I looked after our a Grandmother in our twenties, we looked after our Mom and Step Father when they had cancer at the same time ( my step-fathers was terminal) my mom was also hit by a car and had a broken leg and foot which halted her cancer treatments... that was a crazy year, then we helped our mom after our Step - Dad passed. Now I'm looking after my Dad with Parkinson's.

I think each time was different and I think care giving kind of creeps up on you, and your knee deep in before you know it.

My Dad was doing ok until he started falling and his wife left him. Next thing you know I'm fully in. And pretty alone at the moment.

My advice for a new care giver?!

*Study the art of being assertive and learning boundaries. Now!

*Think about your future-what do you want from your life? Be sure you keep up with these dreams. Do not let them slide by the wayside. Do whatever you can to at the very least keep some part of your dream alive or active in your life. Think of it like food and water it is essential to your own survival. Trust me on this. If you don't your dreams and goals may be gone for a very long time.

*I think the medical community needs to get more involved with addressing care giver roles and stresses. As soon as there is an inclination that the person is going to be the care giver the medical professionals need to have a binder at the ready to give us full of resources and coping skills and what to expect. They need to be assertive and tell us this will not be easy you WILL NEED help not just in your role as care giver but FOR YOU.

*I think psychologists need to study family structures and how families cope during care giving. Maybe there is more we can do to prevent the families breaking down.

*I think we learn as we go as well, this is so complex. I for sure could have learned stronger boundaries from the get go but when your knee deep in crisis mode it's difficult to do anything but survive.

*I think if I took the time to journal or jot down notes as I went of how I was personally coping and pointers to myself I would have been able to reflect on my times of struggle and see all that I was doing and how I was managing even when I didn't think I was.

*Join a support group on line or in your community.

*Again be assertive as much as possible-my Dad has money he doesn't like to spend on himself or getting his care. This caused him to live very precariously and drove me crazy. Hence me checking in and helping him because I didnly like seeing him taking risks and caused me to worry. Perhaps though if I put my foot down he would've gotten help if I wasn't jumping at his every phone call. I'm still processing this because it is near impossible to let our loved ones take risks on their health and wellbeing and safety when we can see they are at risk and they can't. It didn't stop my Dad from falling nor the Parkinson's getting worse. But now that MY savings have run out I have no other choice but to draw a line and ask him to pay for more help I have to survive now for me.
Bottom line use all resources as much as possible. Easier said than done, but in my case my Dad should use his money he has it. I don't.

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If you asked me that today I wouldn't but it will probably change again-sigh.
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