When a Caregiver Dies
When a Caregiver Dies

Categories: Caregiving

A close-up photo of an older couple holding hands.

By Guest Blogger Kathe Palermo Skinner, M.A., L.M.F.T.

For 70 years, she put up with his (sometimes volcanic) rumblings. He doted on her with diamonds and was a poorer father for it.

The youngest of five much older siblings, she was babied into being passive and timid. He was a blustering bad boy who loved control; a lifelong natural at most things mechanical. He took seriously his duties as a man, a spouse and head of the household. He didn’t brook anything that deviated from his definitions of right and wrong, a bigot in many ways. A mother and military wife who could fend for herself and children when she needed to, she preferred being cared for – and he liked it that way.

Both were fortunate. For much of their lifetimes, neither was chronically ill or had a disability – unless you count legal blindness, which he didn’t (though most who drove with him did). And even though she developed macular degeneration, a disease of the eye that usually leads to blindness, she could sometimes see the world better than he did.

Several years ago, her macular degeneration began to impact both of them. By then, her hearing had deteriorated, too, and her world shrank. Although she rarely admitted fears (not to us, anyway), he expressed his the only way he knew how: he fixed as much as he could. He cut her food, gently guided her through the dimly-lit places they avoided more and more, lent her his arm and searched out gizmos and gadgets he found in catalogues. He took care of her.

Last year, George left Kate.

True to his role, George had organized everything, including who his wife’s legal caregiver was to be – my husband. Now, almost a year later, Kate no longer plans on joining George in death right away and doesn’t cry for hours each night. Not that she tells us, anyway. As her vision deteriorates Kate, not surprisingly, adapts.

David and his sisters do what they can from a distance of a thousand miles, mostly via phone calls and the occasional visit. Immediate support comes from close friends and a kind and caring nursing home staff.

Today, it takes a dozen people to do what George did. Even so, he can never be replaced.

None of us could live well if we spent too much time dwelling on the eventuality of death.  But some of us – who have a visible or invisible disability or are chronically ill – need to spend more time thinking about the profound changes a caregiver’s death brings. Like David’s parents, my husband and I are fused by years, experiences, commitment and love. Though I’m the one diagnosed with multiple sclerosis, in truth MS is something we both carry.

As we age and tire, slow and re-prioritize, both of us have to remember that though we plan to go out holding hands as star-crossed lovers, the truth is more mundane …and likely. Whoever is left to mourn, cared-for or caregiver, what needs to happen is the same:

  1. Plan now. The outcomes might look different, but the grief will be the same.
  2. Get your house in order. You don’t have to be a survivalist in order to be prepared with legal, medical, financial and personal concerns.
  3. Create your own family. Gather together people who care, no matter what the will says.
  4. Get outside each other. Get perspective from someone trustworthy and caring who’s outside the mix – perhaps a minister, counselor or therapist.
  5. Express yourself and your needs clearly, often and appropriately. Consider what to say and who you say it to. Sometimes being blunt can be hurtful; at other times necessary. Some people are better prepared to bring a casserole or help with housekeeping than to see you cry. Try out your voice to a journal or pay a therapist or counselor. They can be skilled and trustworthy allies.
  6. Keep in touch with others. It’s unfair (and shortsighted) to place the burden only in one place – like with your son.
  7. Have someone to talk to, starting now, such as a clergy member, therapist, physician, friend, partner or other family. Think of yourself as a nuclear reactor. Keeping it to you guarantees one of two outcomes: shutting down or exploding.
  8. Join a group of those experiencing what you are. There’s no substitute for having someone “get it.” Don’t believe me? Try talking to someone who doesn’t.

Photograph of author Kathe Skinner and her husband DavidKathe Skinner is a marriage and family therapist and certified relationship specialist, who specializes in working with couples, especially those for whom invisible disability is part of the mix. She has been diagnosed with multiple sclerosis for more than 35 years. Kathe and her husband David hold communication workshops in Colorado Springs; they are both certified instructors for Interpersonal Communication Systems. Along with their two hooligan cats, Petey and Lucy, they live along Colorado’s Front Range. Find out more about Kathe and David at www.beingheardnow.com and read Kathe’s blogs, ilikebeingsickanddisabled.com and couplesbeingheardnow.com.

25 Responses to When a Caregiver Dies

  1. Jill C. says:

    not sure if I am on the right site, but here goes. I have been a caretaker for my mother for 4 years, she has alzheimers. we get along great and she wants no 1 else to take care of her, I have finally come to terms with that. I have given up my personal life. I am on ssi, and the gov is right now changing the way I receive my health care. it is very stressful for me with me own problems, depression, pain, and also anxiety.. my regular dr. is not in this plan. my question is can I get finacial help to take care of my mother, and my other question is can I get medicare, to be able to see my same dr. another thing is ssi said I have been disabled since 2005, and I know I have been disabled way before that , before the age of 22. I also would like to know how to go about getting the benifits I deserve. I also was an abused Military wife for over ten years. please some one help.

    • kathyb says:

      Hi Jill,

      You will need to contact the Social Security Administration for information about caregiver benefits. You can call them toll-free at 1-800-772-1213 (TTY 1-800-325-0778) from 7 a.m. and 7 p.m. Monday through Friday.

      You may also want to reach out to the Family Caregiver Alliance. Their website is https://caregiver.org/.

  2. David L says:

    I am too young to have served in Vietnam, or any other war for that matter. I am however, permanently disabled and absolutely do not understand your trouble getting your husband’s disability benefits.
    So, let’s start at the beginning. (First of all, you didn’t mention whether your husband has passed, or is still alive, so I will assume that he is still living). The first steps are fairly easy, so unless you get nowhere, forget about wasting your money on a lawyer. You don’t need one yet, and I don’t know about you, but I don’t have that money to waste. Your first step is very easy. Go online (you obviously know how to do that, since you posted your question). You have two things to do, call Social Security and call Veteran’s Affairs. I don’t think it matters in which order you call them. Have your husband’s information in front of you-Social Security Card, birth certificate, death certificate, if applicable, Voter ID card, etc. I think you get my drift. If they require anything else, they’ll ask you for it. I suggest that you do this first thing in the morning, 8 or 9 whenever they open. Oh, and make a nice pot of coffee first. This is the government you’ll be dealing with, so make sure that you have at LEAST an hour or two. And bring your patience with you. You’ll be surprised how far a little kindness will go. Write down the name of EVERY person you speak to, if only for a second. If they don’t offer their names, ask in a very friendly voice, “to whom am I speaking? “, followed up with something to the effect of, “Good morning, ***** how are you today? ” Continue to try and develop a rapport with the person-believe me, if you can get a laugh, or even a chuckle, you’re half way there. Sorry for going on so long, I hope it helps and I would love to hear from you about how it all works out. Best of luck! David L

  3. Gonul O.L. says:

    I always apprıcıate people who have concern towards to the others,and people really can be counted on as you go through any type of tımes. I grew up ın a helpıng and lovıng large famıly. In tıme as my parents helped many people ın any bad contıtıons, they have had car accıdent and had to stay ın bad lıke a plant over years and years. Guess who helped them?, theır lıttle chıldren and all the people who have been helped dıssappear, so me and my sısters played the ,,Lıttle Women,, game ın lıfe. We made ıt ın some ways goıng through a lot, but made ıt that almıghty God has ben wıth us.
    I was a very health woman and raısed up all my sısters and helped many of them havıng theır own famılıes and jobs, and etc.
    I have had my own famıly as I was near to my 40,ıes to a man who chaısed me over years ın my country and marrıed to me promıssıng me the moon. I belıeved ın hım, and left everythıng behınd by takıng hım my everythıng and everybody ın lıfe and trusted the Lord. I loved hım more than anythıng and everythıng and the way he put me through wıth the others he let them to turture me caused me to have arthrıtıs,fıbro mıalgıa whıch unable me to carry my purse sometımes.
    I came out as a dıamond ın the Chrıstıanıty and on the Gods way but the job I traıned to be cosmotologıst or workıng wıth my hand ıs lıke a dream for me now. I dont hate hım,nor askıng God to hurt hım,but I have been workıng as Volunteer Care Gıver whıch prepaıred me to come back to take care of one of my sıngle sısters who has sheltered ın my apartment as the other sısters do, tıll they stay on theır feet. I have been takıng care of her over 2 years but she passed away. It hurts but I loved my job wıth her more although was hurtful.
    Now, I am lookıng for a chance to go back to the USA, as a USA cıtızıen and fınd a job as CARE GIVER whıch I can do I guess for now. It ıs so touchy,and sweet to see the people are so apprıcıatıng what you do for them as they need help. I am on the recovery of loosıng my sıster and especıally after dıvorce of mıne, but lıfe ıs good and there are many nıce people out there, hopefully I wıll be fındıng a good job so I could be a help ın people who needs help.
    God Bless,and thanks for your tıme. Please keep us ınformed.
    Gonul L.

  4. Dr B. says:

    If you are not crying after reading this, you are not human. As our lives get smaller and smaller (my husband has terminal Gulf War Illness), I worry about what would happen to him, should I die. I care for him, do all the driving, house-work, paperwork (mountains of this) and cooking. All the shopping, yard work, his personal care and I take care of our three cats (four legged children if there ever were some). I do all this with love and sometimes frustration, but I do not have a clue who might step in my shoes and care for him like I do.

    But now that the seed is planted, I will look into this. I want to be sure we leave nothing to chance, nothing missed. I want to be sure he will always be loved and taken care for. It’s my job and I am the luckiest lady in world to have landed it.

    • Kathe Skinner says:

      I’m hoping you’ve gotten veteran’s benefits, unlike Phyllis who has also commented. Look now at assisted living facilities because his care might become a too-heavy burden, strong as you are. Home care might be paid for by SSDI or other programs. Because you have nothing else to do ; ] might as well add this to your to-do list.

      We actually don’t realize sometimes that the quality of care we give to others is equal to the quality of care we give to
      ourselves…taking care of yourself expresses your love, too!

      Self-care you wonderful lady, self-care!

      P.S. Sounds like you’re both pretty lucky!

  5. Julie G. says:

    Thank you. Poignant. Several suggestions had to do with bringing up the issues with others. Here is a tool to help with identifying your goals toward the end of life: GoWish.org or order a set of actual cards to hold, sort and resort with different scenarios. It is a wonderful way to start a difficult conversation. Just leave them on the table and the conversation will start itself. CodaAlliance.org

    • Kathe Skinner says:

      Thanks SO MUCH, Julie, for sharing this great information with us, especially with me. With your permission, I’d like to share CodaAlliance.org on fb, twitter, and my blog if that’s okay…

      Gotta go now; I’ve got a couple of websites to visit!

      P.S. Hope you visit my blog and stay in touch. Thanks, again, for great information.

  6. Mark H. says:

    Thank you for such a well written and honest article. Planning is absolutely the most loving thing you can do for your family and friends. It also will do wonders for you; knowing things are in order.

    • Kathe Skinner says:

      Great point, Mark! George actually had done that but he didn’t do any updating on lots of the financial stuff. That turned into something interesting for David and his sisters to unravel!

      So it’s important to say that updating is hugely important.

      (thanks for the compliment btw)…

  7. Phyllis C. L. says:

    My husband has severe dementia, in the last 6 months he had a stroke in November, December 17th he had an aortic anurysem, operated on, while in the hospital contracted E-Coli, finally came home and the incision became infected on his groin, He now at this time has had 3 strokes in all. I have taken on all his caregiving because he will not permit any one else, I have applied for Social Security disability, Veterans Benefits and have been denied He was in the Air Force during the Viet Nam War. It is so unfair as now he has the mind of a 3-4 yesr old

    • Kathe Skinner says:

      Have you gone to the V.A., or talked with someone there? I guess I should ask if he was in the A.F. long enough to retire w/benefits. Also, there’s benefits for Vietnam-era vets especially regarding exposure to Agent Orange. If nothing else, contact a lawyer who specializes in getting SSDI or other benefits for clients; you’ll pay a portion to him/her but it’s better than a poke in the eye, as my mother would’ve said.

      Good luck, Phyllis!

  8. HypoGal says:

    Great article. Thank you for the reminder and insight.

    • Kathe Skinner says:

      It’s easy to forget about planning for when the inevitable happens. I sure know how fast the time goes…

      I really appreciate the time you’ve taken to comment…thanks!

  9. Juliette B. says:

    Tears welled up in my eyes almost from the start of your story. I’m , we’re , in their shoes.
    You have moved me to act before the sad part begins for one of us.
    Actually we seem to be going thru a reversal also, I’m disabled with torti collis, a dystonia in my ck.
    I’ve started some pretty bad memory problems too,and while we joke about it now,I know in my heart… thank
    you so much

    truly juliette
    thank you so much

    • Kathe Skinner says:

      Juliette, your words have touched me a great deal. It’s me who must thank you for sharing your story with all of us.

      I know that David doesn’t feel burdened by what he does for me, anymore than George did. But it really is unfair, to both of us, to rely so heavily on each other. Sadly, just like for George and Kate, the way a love story ends is always the same.

      By the way, you can help others understand you better by using this story. I love it when that happens : )

  10. Elizabeth M. says:

    no questions at this time

  11. Crystal D. says:

    This article is very though provoking. Usually the complete focus is on the individual receiving care. Overlooking the wellbeing of the care provider. In some cases the individual receiving care will only allow the caregiver to assist them and on one else. I am interested in exploring remedies for couples in this situation.

    • Kathe Skinner says:

      Funny how it foes round and round, doesn’t it Crystal? Whether we plan to or not, it always happens that our lives end up being shared with others. Whether we’re caregivers or cared-for, the lines blur so that all that’s remaining is the great affection we have for each other…

  12. Ruth H. says:

    This is a wonderfully, lovingly written article. People should print it out so as caregivers to someone that they can be prepared, it is the only way. I am, oops was a caretaker to my own wonderful mother, who suffered from a variety of complicated diseases, including mental illness. She died on me on February 9th 2014. I was prepare as I could be, but it was not enough. She didn’t have any life insurance for her burial, so the state had to pay.. My uncles paid the rest. I miss her everyday, I am ashamed that sometimes I wished I wasn’t her caretaker but now that she is gone, I would be anything she wanted if she would come home.

    • Kathe Skinner says:

      Dearest Ruth, you are definitely in good company in having felt overwhelmed as Mom’s caregiver. Don’t ever feel guilty for having what are genuinely human feelings. Caregiving’s such an act of love, one we usually perform when those we care for can’t appreciate all we do. You’ve been a caring daughter who now deserves to forge a life of happiness for yourself.

      Be happy, Ruth! Sounds like you’ve earned it~

  13. Norma Jean T. says:

    Kate’s story is one that touched me greatly. I too have issues that sometimes overwhelm me to the point of near despair. I am confident that I will now try to do as Kate has done. Not sure where the help will come but I must create my own family and get out to do things while I still can. Thank you for this insight to some of my problems. I think with my disability that I may qualify for a therapist which I think will give me the start I need.

    • Kathe Skinner says:

      Take heart about finding a “family”; good people can be found in some very surprising places. Take care, though, that your need doesn’t outweigh what your gut tells you. Not everyone is as lovely as you — even therapists! Find the right fit, Norma Jean!

      P.S. Please share what you like of my stuff with others. Makes me feel really good when I can shed some light for someone…

  14. Becke says:

    Leaves me wanting to read more of what you write.

    • Kathe Skinner says:

      Becke, you have darn near made my day…even my weekend! Please do read more of what I write! All us writers and helpers need pats on the head from time to time — thank you! And share me with your friends; I’m not good at that marketing thing, so I really rely on people who “know” me to let others hear my voice.

      With thanks,