singring...my mother is at the end stages of her dementia and watching her just wither into a helpless, vulnerable person that can't do anything for herself is killing me!! my heartbreaks daily. life, sure is hard at the end!!!
I recently lost my father to dementia after six years of gradual decline. While there were times that I thought I couldn't handle caring for him any longer (I am disabled), I knew that I would continue to do so because I believed that it gave him comfort and some peace of mind. Now that he's gone, I spend lots of time wondering if I really did help him, that I may not have done enough. What his disease did, the way it made him behave, was not the issue for me. I cry now because I can't stop thinking about his anxiety, his fear, and the unfairness of it all. The burden was on him for the rest of his life, I wish I could have taken that away. It was an honor to do what I did for him, never a burden.
David, I love the way you write. My husband has a more moderate degree of cognitive impairment, partially due to a subdural hematoma 18 years ago, and partially due to Wernicke-Korsakoff Syndrome. He's 8 years older, and we're both in our 70's. While it hasn't been a burden to assume managerial responsibilities where I formerly deferred to him, it has been difficult for both of us to face the inevitability of my assuming the more physical nature of his care -- diapers, etc. While I freely and without guilt acknowledge that down the road he'll need institutional care, he lives in denial; and I can only pray that he gets the lucky break of passing on in his sleep with a sudden event, because if I end up going first, God help our children! Bless you for your good sense, pragmatism, and consideration for your spouse.
Bless you on recognizing the COMMUNITY of this disease. My father and mother were both diagnosed with the evil disease, but I found at the end of their lives the disease never reached the soul of my parents. When it came to love, I could see it in bothe of their eyes!
David, I have the feeling that caring for you would be less of a burden than caring for some people. So much is in the personality. You are devoted to your wife and family and care about them. I don't see any unusual selfishness at all in you. You are already thinking of your family in the future as things get worse.
One thing to consider is that for a lot of people it does not get so bad that a separate facility is needed. It is what I hope for you. If you and your families have plans made about "what if," then living in the present seems the best idea.
I look at your picture and read your words, and have a hard time envisioning that it could get worse for you. I wish we could freeze a point in our life so we could really stay in the moment. I know we can't. I guess the only thing we can do is try to be content as possible, whether sick or well.
My father had mixed dementia. He was able to stay home until the last week of his life. He was able to attend to his ADLs and feed himself. He kept most of his mental faculties until the last week. He was never a burden to my mother. They had been married for 65 years, so she saw it as part of the marriage. It was easier because he was fairly easy to assist.
I don't think of Hubby taking care of me as he's 92 and I'm 73. It's my kids. I don't want them to need to put up with me if I'm doing all the diapers, memory loss and stuff. I do believe it's our American culture that has me thinking this. Maybe I'd be more empathetic if I had seen this in my family. As it was, my step-father took care of my Mother (at home); and then, Step-father's oldest Son took care of him . (He went into an assisted-living home). Suicide is definitely NOT an option for me. My religious convictions are too strong to do something like that. I just pray that I don't get dependent too much on the kids.
David is right on target on some of his thoughts! But, as a Caregiver I care and provide for My Lady 100% daily and "Can not consider doing anything else"! She is now in her 11th year of alzheimers and now seems to be the final leg of Our Journey Together! She has been a catalyst in My Life as she was with her patients for 47 years! Yes, some folks think I'm being foolish by providing her care and not move her into a Care Center! My background and capability (I'm 7 years younger) dictates that I must stand by her side and one day I can rest knowing I gave her My Best! Recently, when she was taking her mid day nap, she screamed out for me to call the Police? I asked her why do I need to call the Police? Because "I'm Killing You"! I looked at her and knew she was caring this Huge Burden of guilt! I sat on the bed and said "Hey I Love cooking, cleaning house, etc., and now I get to stay around the house and care for My Lady"! She looked at me and said "but your younger then me and should be out there living your life"! I told her You are My Life and when You Smile my heart races and I know I'm doing the right thing! So, David Your Lady might be saying the same thing in her mind that I feel for My Lady! Just a "Small Smile" from you down the road of time will hopefully get her heart racing! I know she will give you a Kiss On the Cheek and give you a Bigger Smile in Return! So, remove some of that Burden and try to take one day at a time going forward! Please take care of Your Partner for now!
Hang in there from a Warrior of 11 years who will not back down--because I CARE!
Castle wrote almost everything I was thinking! Caretaking is one thing...but giving up one's life to caretake to the point where it causes severe depression and anxiety is something else! Unfortunately some people can't afford to get help for their loved ones...it's not a matter of not loving them...it's a matter of life and death for the caretaker. Would be nice if all family members would help take care of their loved ones...but after reading all these posts...it surely is NOT the case! All of us should make plans with our loved ones as to how we can help them if and when we get to a point of being incapable of taking care of ourselves! We ought NOT be selfish and expect them to take care of us to the end...unless you are one of the lucky ones that stays healthy until later in life and luckily dies of a heart attack in your sleep! lol Anway...my two cents!
It feels very good to me to hear these comments from a man, who acknowledges and recognizes that perhaps our insistence on individualism is responsible for many people's fears of being a burden - when other cultures see increased contact and care as part of a long relationship. I learned about that valuable time of relationship when I took responsibility for my brother with brain injury. I don't regret it - and by now he is finally in an assisted living facility - but they didn't help him avoid weight gain and needs and crises increase with age - and no one wants to feel they have been "abandoned" to a nursing home to decline.
I think our fear and reliance on professionals leaves us blind to many facets of family constraints, so we assume that being put into an institution is one final act to be feared and then accepted. In real life, the increase in needs is gradual, can best be seen from close up, and a decision needs to be made, near which child, the end of life years will best be set up, assuming that continued family visits are also needed. In today's spread out world, one child is usually more involved than others, and the one who is most attuned to caregiving - often a daughter, not always - tends to see the needs and potential, and then volunteers, but does not understand the complexity of taking on a complete role - and how that will change her earning potential and savings, and her relationships with other sibs, whose lives don't change because they live so far - so they retain an illusion that care is not too time consuming.
There is no custom for arranging for some added account to save for the caregiver's lost years of working, to add to their retirement money, considering the impact if care needs go on for many years. Money needs to be set aside not just for a facility but often for care adaptations not provided by Medicare, and for travel costs for visits. Time needs to be counted for negotiating with providers - who often change during care, sometimes with negative consequences.
Elders need a younger person's involvement - maybe hire a Guardian/money manager, have a back up plan, rather than simply assume that the volunteer child will continue forever. Hire someone who knows both financial needs of the elder and caregiver, and support conversation and evolving reviews of needs.
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Thoughts on Dementia Care, Relationships and Being a Burden
One thing to consider is that for a lot of people it does not get so bad that a separate facility is needed. It is what I hope for you. If you and your families have plans made about "what if," then living in the present seems the best idea.
I look at your picture and read your words, and have a hard time envisioning that it could get worse for you. I wish we could freeze a point in our life so we could really stay in the moment. I know we can't. I guess the only thing we can do is try to be content as possible, whether sick or well.
My father had mixed dementia. He was able to stay home until the last week of his life. He was able to attend to his ADLs and feed himself. He kept most of his mental faculties until the last week. He was never a burden to my mother. They had been married for 65 years, so she saw it as part of the marriage. It was easier because he was fairly easy to assist.
Hang in there from a Warrior of 11 years who will not back down--because I CARE!
Jim
I think our fear and reliance on professionals leaves us blind to many facets of family constraints, so we assume that being put into an institution is one final act to be feared and then accepted. In real life, the increase in needs is gradual, can best be seen from close up, and a decision needs to be made, near which child, the end of life years will best be set up, assuming that continued family visits are also needed. In today's spread out world, one child is usually more involved than others, and the one who is most attuned to caregiving - often a daughter, not always - tends to see the needs and potential, and then volunteers, but does not understand the complexity of taking on a complete role - and how that will change her earning potential and savings, and her relationships with other sibs, whose lives don't change because they live so far - so they retain an illusion that care is not too time consuming.
There is no custom for arranging for some added account to save for the caregiver's lost years of working, to add to their retirement money, considering the impact if care needs go on for many years. Money needs to be set aside not just for a facility but often for care adaptations not provided by Medicare, and for travel costs for visits. Time needs to be counted for negotiating with providers - who often change during care, sometimes with negative consequences.
Elders need a younger person's involvement - maybe hire a Guardian/money manager, have a back up plan, rather than simply assume that the volunteer child will continue forever. Hire someone who knows both financial needs of the elder and caregiver, and support conversation and evolving reviews of needs.