Trying to support my sister, who is caring for her husband at home who has Parkinson's Disease. She is caring for him 24/7 and is exhausted. He is still driving and doesn't want to give it up. She thought he wouldn't pass his driver's test and that would be the end of it. But he did. He was recently cited in an accident. Thankfully no one was hurt. She wants him to have his independence as long as possible, but every time he leaves the house, it's so stressful. And he's a social person who likes to go out often, usually the the grocery store, because he likes to cook, or to the hardware store, because he wants to do things around the house or yard. But everything thing he does, he calls for my sister to help him and she can't get anything else done or take a nap. She says they can't afford an outside caregiver. What should she do?
Caregiving is super stressful. There are no manuals to teach that skill! Having recently had open heart surgery, I saw how difficult it was on my husband. I quickly learned how dependent I was on him and prayed for my eyes to be open to see things from his perspective; I saw he had needs that weren’t being met; lack of sleep due to my excruciating pain, not eating on a regular schedule, watching my every move because he was afraid I would fall, etc. all focus was on me. We agreed to sit and talk about our needs each day. We had to really listen. We asked what is going well and not so well. We planned our meals in advance to make meal times more efficient. We had rest times scheduled as well. The key was communicating clearly about our needs, concerns and hopes. I also looked for small things I could do to help myself and help him. No one knows how difficult caregiving can be until you have walked in those shoes. Stuffed emotions can cause outbursts and unnecessary stress. If that happens be quick to forgive and learn from it. I pray that all concerns be discussed calmly and honestly on a regular basis. Hopefully, positive change will come. Wishing you all the best❤️
Trying to support my sister, who is caring for her husband at home who has Parkinson's Disease. She is caring for him 24/7 and is exhausted. He is still driving and doesn't want to give it up. She thought he wouldn't pass his driver's test and that would be the end of it. But he did. He was recently cited in an accident. Thankfully no one was hurt. She wants him to have his independence as long as possible, but every time he leaves the house, it's so stressful. And he's a social person who likes to go out often, usually the the grocery store, because he likes to cook, or to the hardware store, because he wants to do things around the house or yard. But everything thing he does, he calls for my sister to help him and she can't get anything else done or take a nap. She says they can't afford an outside caregiver. What should she do?
I'm my husband's caregiver severe heart failure, and now post transplant. I agree with @marsims, your sister needs to communicate her needs. Communicate how his driving, though gives him some independence, but causes TONS of stress. Is there a compromise somewhere (quieter times to drive? They have a "shopping date" scheduled 2-3x per week. I found scheduling outings helped my husband look forward to things and allows me to priotize my schedule. Also, encourage your sister to reach out to others to come pick him up for their social interactions, come over for afternoon coffee. Encourge your sister to communicate she needs to schedule in times for self-care. There are also community support groups, free transportation that can help; some can be free depending on income levels.
Trying to support my sister, who is caring for her husband at home who has Parkinson's Disease. She is caring for him 24/7 and is exhausted. He is still driving and doesn't want to give it up. She thought he wouldn't pass his driver's test and that would be the end of it. But he did. He was recently cited in an accident. Thankfully no one was hurt. She wants him to have his independence as long as possible, but every time he leaves the house, it's so stressful. And he's a social person who likes to go out often, usually the the grocery store, because he likes to cook, or to the hardware store, because he wants to do things around the house or yard. But everything thing he does, he calls for my sister to help him and she can't get anything else done or take a nap. She says they can't afford an outside caregiver. What should she do?
You just described me. I wondered if my sister wrote this! 😁 I hardly know what to say but I sympathize with you. So hard to explain to others. I get lots of advice but very few understand the exasperation and even depression I feel. When he takes on a home project such as recently putting up new curtains he drills holes where they shouldn’t be in my freshly painted kitchen. (Just one example) When I say something he goes ballistic. I just feel like I just have to put up with it but it is affecting me mentally. Through church, friends, family my support system is good and kind but no one really understands. Sending prayers!
PS My hubby has Parkinson’s and MCI still driving but with restrictions - within 10 miles, no highway or night driving.
Trying to support my sister, who is caring for her husband at home who has Parkinson's Disease. She is caring for him 24/7 and is exhausted. He is still driving and doesn't want to give it up. She thought he wouldn't pass his driver's test and that would be the end of it. But he did. He was recently cited in an accident. Thankfully no one was hurt. She wants him to have his independence as long as possible, but every time he leaves the house, it's so stressful. And he's a social person who likes to go out often, usually the the grocery store, because he likes to cook, or to the hardware store, because he wants to do things around the house or yard. But everything thing he does, he calls for my sister to help him and she can't get anything else done or take a nap. She says they can't afford an outside caregiver. What should she do?
Trying to support my sister, who is caring for her husband at home who has Parkinson's Disease. She is caring for him 24/7 and is exhausted. He is still driving and doesn't want to give it up. She thought he wouldn't pass his driver's test and that would be the end of it. But he did. He was recently cited in an accident. Thankfully no one was hurt. She wants him to have his independence as long as possible, but every time he leaves the house, it's so stressful. And he's a social person who likes to go out often, usually the the grocery store, because he likes to cook, or to the hardware store, because he wants to do things around the house or yard. But everything thing he does, he calls for my sister to help him and she can't get anything else done or take a nap. She says they can't afford an outside caregiver. What should she do?
@teresagiselle This discussion may give you some information on when to stop driving. https://connect.mayoclinic.org/discussion/caring-for-a-parent-with-neuropathy/
It’s a very difficult discussion to bring up. If he passed his driver’s test, that can make it even more difficult. Did his test include an actual driving test or was it just knowledge?
Maybe setting up a schedule, like others have mentioned, to do chores or repair things would work. Can you talk to your sister to see if she would be open to this suggestion?
I am so sorry for your overwhelming position. It is alright to have these feelings. I am a caregiver for my husband. It can be overwheming and quite physically and emotionally overwhelming. This was of course not what we planned for. I try to do small stuff for myself when I can. Reading, watching a favorite movie or talk to my friends and family. Of course sharing limited stuff. I know that is not always enough. Hope that helps. Stay strong. ..know someone cares!
You just described me. I wondered if my sister wrote this! 😁 I hardly know what to say but I sympathize with you. So hard to explain to others. I get lots of advice but very few understand the exasperation and even depression I feel. When he takes on a home project such as recently putting up new curtains he drills holes where they shouldn’t be in my freshly painted kitchen. (Just one example) When I say something he goes ballistic. I just feel like I just have to put up with it but it is affecting me mentally. Through church, friends, family my support system is good and kind but no one really understands. Sending prayers!
PS My hubby has Parkinson’s and MCI still driving but with restrictions - within 10 miles, no highway or night driving.
I totally relate to what you said.
I see the changes and in my husband it’s hard and so tiring and exhausting being a caregiver. I haven’t really told anyone I guess I have been in denial. We have no family just me. Lately I have been just mentioning a few things to friends, like you I don’t feel they really understand. I am from the UK all my family is there and my best friend, my other friends moved to texas. I’m just so terribly tired I woke up at 3:30 that’s how I have the time to write on Mahon connect. Hang in there, take a deep breath occasionally what else can we do? 😍
My husband is 85 and I am 76. If I think back to 2020 I can see very slow changes. He has never been diagnosed other than I think he has mild cognitive I have recently seen more changes. I find that I have to be two steps ahead all the time which is exhausting. We don’t have any family. The changes I see are probably minor like washing hands after using the bathroom, putting the garbage in the wrong bin etc. this may seem minor but mentioning washing his hands seems to end in an argument. A lot of the things he does I don’t even mention that way we can have a nice day. The toilet issue is a big concern to me. My girlfriend said when he says something just say okay it works most of the time. He doesn’t wear his hearing aids either. I feel I am agreeing so much with him to have a happy life that I am losing me along the way. I go for coffee with my girlfriends occasionally and the other day decided I needed a massage, that was bliss. My stomach is upset most of the time. How does one get a grip on this?
I called a non profit caregiver group and they sent me a package and said they will check in with me every 6 months. I think he is aware of his forgetfulness but we have never discussed it. Any input would be appreciated?
Thanks, Jean
I am so sorry for your overwhelming position. It is alright to have these feelings. I am a caregiver for my husband. It can be overwheming and quite physically and emotionally overwhelming. This was of course not what we planned for. I try to do small stuff for myself when I can. Reading, watching a favorite movie or talk to my friends and family. Of course sharing limited stuff. I know that is not always enough. Hope that helps. Stay strong. ..know someone cares!
Being an emotional caregiver from a young age to my mother who suffered with severe depression to both physical and emotional caregiver now - my 88 year old mother. And my 55year old fiance —— like you said “ certainly not what we planned “ dreams have been put on hold or realized they will not come to fruition. So now it’s the smaller things that are meaningful ……. I hate waking up every morning with that sick feeling in my stomach of what will today hold …. I try to say Serenity Prayer over and over — just feel so sad and alone - long Covid has taken so much of him/ fiancé and we feel helpless to it , do not see an end ….and my mothers stroke and dementia has taken a lot of “ mom” - even though some of her personality has really softened - in a good way .
I just feel so heavy hearted and sad so often ….
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Trying to support my sister, who is caring for her husband at home who has Parkinson's Disease. She is caring for him 24/7 and is exhausted. He is still driving and doesn't want to give it up. She thought he wouldn't pass his driver's test and that would be the end of it. But he did. He was recently cited in an accident. Thankfully no one was hurt. She wants him to have his independence as long as possible, but every time he leaves the house, it's so stressful. And he's a social person who likes to go out often, usually the the grocery store, because he likes to cook, or to the hardware store, because he wants to do things around the house or yard. But everything thing he does, he calls for my sister to help him and she can't get anything else done or take a nap. She says they can't afford an outside caregiver. What should she do?
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3 ReactionsCaregiving is super stressful. There are no manuals to teach that skill! Having recently had open heart surgery, I saw how difficult it was on my husband. I quickly learned how dependent I was on him and prayed for my eyes to be open to see things from his perspective; I saw he had needs that weren’t being met; lack of sleep due to my excruciating pain, not eating on a regular schedule, watching my every move because he was afraid I would fall, etc. all focus was on me. We agreed to sit and talk about our needs each day. We had to really listen. We asked what is going well and not so well. We planned our meals in advance to make meal times more efficient. We had rest times scheduled as well. The key was communicating clearly about our needs, concerns and hopes. I also looked for small things I could do to help myself and help him. No one knows how difficult caregiving can be until you have walked in those shoes. Stuffed emotions can cause outbursts and unnecessary stress. If that happens be quick to forgive and learn from it. I pray that all concerns be discussed calmly and honestly on a regular basis. Hopefully, positive change will come. Wishing you all the best❤️
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9 ReactionsI'm my husband's caregiver severe heart failure, and now post transplant. I agree with @marsims, your sister needs to communicate her needs. Communicate how his driving, though gives him some independence, but causes TONS of stress. Is there a compromise somewhere (quieter times to drive? They have a "shopping date" scheduled 2-3x per week. I found scheduling outings helped my husband look forward to things and allows me to priotize my schedule. Also, encourage your sister to reach out to others to come pick him up for their social interactions, come over for afternoon coffee. Encourge your sister to communicate she needs to schedule in times for self-care. There are also community support groups, free transportation that can help; some can be free depending on income levels.
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Helpful -
Hug
2 ReactionsYou just described me. I wondered if my sister wrote this! 😁 I hardly know what to say but I sympathize with you. So hard to explain to others. I get lots of advice but very few understand the exasperation and even depression I feel. When he takes on a home project such as recently putting up new curtains he drills holes where they shouldn’t be in my freshly painted kitchen. (Just one example) When I say something he goes ballistic. I just feel like I just have to put up with it but it is affecting me mentally. Through church, friends, family my support system is good and kind but no one really understands. Sending prayers!
PS My hubby has Parkinson’s and MCI still driving but with restrictions - within 10 miles, no highway or night driving.
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7 ReactionsHave you contacted Senior Services? See if they can assist you with your caregiving.
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2 Reactions@teresagiselle This discussion may give you some information on when to stop driving.
https://connect.mayoclinic.org/discussion/caring-for-a-parent-with-neuropathy/
It’s a very difficult discussion to bring up. If he passed his driver’s test, that can make it even more difficult. Did his test include an actual driving test or was it just knowledge?
Maybe setting up a schedule, like others have mentioned, to do chores or repair things would work. Can you talk to your sister to see if she would be open to this suggestion?
I am so sorry for your overwhelming position. It is alright to have these feelings. I am a caregiver for my husband. It can be overwheming and quite physically and emotionally overwhelming. This was of course not what we planned for. I try to do small stuff for myself when I can. Reading, watching a favorite movie or talk to my friends and family. Of course sharing limited stuff. I know that is not always enough. Hope that helps. Stay strong. ..know someone cares!
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4 ReactionsI totally relate to what you said.
I see the changes and in my husband it’s hard and so tiring and exhausting being a caregiver. I haven’t really told anyone I guess I have been in denial. We have no family just me. Lately I have been just mentioning a few things to friends, like you I don’t feel they really understand. I am from the UK all my family is there and my best friend, my other friends moved to texas. I’m just so terribly tired I woke up at 3:30 that’s how I have the time to write on Mahon connect. Hang in there, take a deep breath occasionally what else can we do? 😍
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Hug
5 ReactionsMy husband is 85 and I am 76. If I think back to 2020 I can see very slow changes. He has never been diagnosed other than I think he has mild cognitive I have recently seen more changes. I find that I have to be two steps ahead all the time which is exhausting. We don’t have any family. The changes I see are probably minor like washing hands after using the bathroom, putting the garbage in the wrong bin etc. this may seem minor but mentioning washing his hands seems to end in an argument. A lot of the things he does I don’t even mention that way we can have a nice day. The toilet issue is a big concern to me. My girlfriend said when he says something just say okay it works most of the time. He doesn’t wear his hearing aids either. I feel I am agreeing so much with him to have a happy life that I am losing me along the way. I go for coffee with my girlfriends occasionally and the other day decided I needed a massage, that was bliss. My stomach is upset most of the time. How does one get a grip on this?
I called a non profit caregiver group and they sent me a package and said they will check in with me every 6 months. I think he is aware of his forgetfulness but we have never discussed it. Any input would be appreciated?
Thanks, Jean
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4 ReactionsBeing an emotional caregiver from a young age to my mother who suffered with severe depression to both physical and emotional caregiver now - my 88 year old mother. And my 55year old fiance —— like you said “ certainly not what we planned “ dreams have been put on hold or realized they will not come to fruition. So now it’s the smaller things that are meaningful ……. I hate waking up every morning with that sick feeling in my stomach of what will today hold …. I try to say Serenity Prayer over and over — just feel so sad and alone - long Covid has taken so much of him/ fiancé and we feel helpless to it , do not see an end ….and my mothers stroke and dementia has taken a lot of “ mom” - even though some of her personality has really softened - in a good way .
I just feel so heavy hearted and sad so often ….
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Hug
3 Reactions