My husband and I have talked many times about the guilt we feel for having placed his father into residential aged care, and in particular into high care for the last 5 months of his life. The term ‘high care’ is a bit of an anomaly, as many ‘homes’ simply do not offer care for the whole person. They do the basic tasks (e.g. washing and dressing them, providing in many cases inedible food), but they do not treat their residents as if they are living in ’the last home of their life’. So to call it ‘care’ is in many sites really a misnomer. The residents are locked in, and feel like they are in prison. My father in law did. My young friend in aged care still does. I know I would.
Our guilt is often tempered by the rational discussions we have about how even if my husband was retired and home full time, it would have been a gargantuan task. We know the great gift we gave his mother by nursing her at home, and allowing her to die in her own home. This guilt still sits there though, gently resting deep inside our hearts, never quite going away. We know many loving partners of people with dementia who have had no choice than to move their loved ones into residential care, and most say they too feel this guilt, even though logically they did have no choice, and it was a decision made in the very best interest of their beloved one.
Today I read this article on The Alzheimer’s Reading room by the incredible Bob De Marco, and it helped ease my guilt. If you are caring for someone you love, or have done so in the past and feel any guilt for having placed them into an aged care facility, you might want to read it… Double Stigma around Dementia and Death Part way through it Bob writes; “ I want to say here though, I now understand that it is not possible for every dementia patient that “wishes” to die at home, to die at home. In many many cases the “sole” caregiver can no longer care for the patient on their own. They just can’t do it, and it would be wrong for them to try when they reach the point when they know they can’t.”
Yes, your are so right, Kate-putting someone in a care home is a very difficult decision for some, however, if i didn’t have to go to school or work, i would be looking after my Grandad 24/7, or as much as my Grandma wanted, until i had a health turn myself. Most people regret the choice of putting their loved one into aged care, but others don’t-most people try and do the best they can. Unfortunately, my Auntie does nothing and doesn’t even work, so she will be no use, although i would love it soooo badly if she looked after him 40 hours a week. My parents would look after him if they could, but unfortunately they have to work. Sometimes people put there family members into care, because some live overseas or in a different state/city, some simply are unable to look after them, some have other problems in there life, which stops them from looking after there love one, or they have a health turn themselve, or the workload gets too difficult for them. I have known lots of people who have put there relatives into care, because they live overseas, or because they have to work, or have there own health issues, or have there own children to look after. Personally, i would only feel the guilt, if it gets to a point where there is still something i could have done to have kept them at home for longer.
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Your granddad is so lucky to have you Sam ✅✅✅
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Thank you so much, Kate-that means so much to be-it really does!x💜💜💜💜
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⭐️⭐️⭐️
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Reblogged this on Forget-Me-Not and commented:
We’re not at the stage of residential care yet, but I still feel guilty when I get frustrated with my dear husband.
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I was looking on the internet to find some options on how to care for my elderly parents in West Palm Beach, FL. I found a great website with lots of pertinent info. Check it out at http://www.seniorhomecareadvice.org maybe it can help you too.
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Visiting Angels is indeed a blessing. I needed someone to care for my mom who lives in Palm Beach Gardens, FL. She suffers from Alzheimer’s and I live in England. I was able to choose the right caregiver for my Mom. The person was experienced and had excellent credentials. I have peace of mind knowing that Mom is in capable hands. You should check them out at http://www.visitingangels.com/palmbeaches (561-328-7611) if you need senior care services.
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Thanks for this Marilyn… it might help some readers. Cheers
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There is just no easy way around this reality. Perhaps there is comfort in knowing our limitations and honoring them, rather than adding more pain and heartache to an already intolerable situation? My heart aches for the knowing that there are so few AFFORDABLE ways to access the loving whole person care that is required at end of life. Thank you for sharing with such honesty and candor something we all need to think about. Blessings and peace to both you and your husband, it is an honor to be witness to this part of your life.
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Thanks Beth. I was discussing this guilt in depth with two friends who work in aged care yesterday, and we all decided the guilt aspect needs someone to do a PhD about. As you rightly say, affordable ways to access the real person is almost impossible and takes an enormous amount of time and love. With love and hope, Kate
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Indeed. In the meantime, love and hope to you as well.
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it is terrible and making choices is really hard
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