In home care(7)
Comments
-
Hi,
I think it's great that you are able to help your aunt with your mother's care and give her some breaks. That said, I would recommend falling in with what your aunt prefers. If you browse the threads, you will see that people note a period of 6 weeks to 3 months for a person with AD to adjust to a new environment or routine. With no short term memory the PWD is unable to save new information and store it. That includes not just things they are told, but even things they see. For instance, I think that when my mom came to live with me she could see family belongings (a vase, my grandmother's tea set) that she could remember she had given me a long time ago, and so even though she could not recognize my home for weeks, she knew that she must be in my house.
Additionally, your mom may not realize the limitations of the disease. If she's stage 5 her executive ability has been severly affected.
https://tamcummings.com/stages-of-dementia/
http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf
Though she thinks she can, her ability to initiate and follow through with things is quite diminished--and that's ok. She does not necessarily have to be kept active at all times. It takes a lot of focus to navigate the day and there's only have so much bandwidth they can use to do that. Routine is their friend. Routine let's them be successful.
Multi-step or new tasks will be a challenge for her. However, often the AD will take away the ability to recognize this (anosognosia). Still, your mom will retain the feeling that she wants to do more--just like she used to do--and this is what you're hearing about. My mom says she's bored at her AL, but when pushed will avoid going outside her comfort zone. So. After discussing it with your aunt, I think you can respect your mother's wishes by taking her to the library and checking out some books for her, but you should be responsible for the entire process, including getting the books back on time. Chances are she will forget that you have done this. Do not create more work for your aunt--she has a lot on her plate as it is. As primary caregiver, the caregiving should go at her pace unless she becomes overwhelmed. Ask her what she needs--I think if you would talk her into going away for a weekend, and you were to stay with your mother, you would see that a lot of her autonomy has gone-she won't realize it, but at stage 5 you will be giving a lot of cues--your mom may be aware of this guidance and not like it, or the change in the dynamic with her sister.
0 -
I think it's great that you moved your mother and aunt close to you so you could help out! This will become even more important as your mom declines. Your aunt has a really big job on her plate, no one really understands what it is like until they have done it (you will see this theme over and over again here on these boards.) I agree that establishing a routine for a person with dementia is crucial and that may be what your aunt is going for here. Bringing in strangers for care will be another disruption and will likely need to be done slowly and carefully. But there is something else to consider here. Dementia is about so much more than memory loss, it is also about increasing problems with executive function, reasoning and safety. If your mother is in stage 5, she probably doesn't realize she can no longer handle things she used to enjoy, like book clubs and other forms of socialization. Do read up on anosognosia. Have you considered a day program a couple days a week, once she settles in? There, the activities will be geared to her abilities . Participants in groups without cognitive deficits can shun PWD who can't keep up, making them even more unhappy. It is normal for a PWD to feel they are a prisoner, are being told what to do --- they don't understand that they can't go out when they want, that they need reminders and help with so many things. Your aunt probably doesn't want her to help because she can't complete tasks , or does them poorly. Sadly, there are unhappy times when a person feels everything is slipping away. Sometimes the best thing we can do for our LO and her caregiver is offer a sympathetic ear.0
-
Daughter - Welcome to this group that no one wants to join, but we benefit so much from the caring wisdom shared. Do read the Understanding Dementia - by Ghent-Fuller article that Emily shared, if you have not already. It is a great summary of what may be in the future, though every PWD is different. Would your aunt consider it also?
I think you have received excellent guidance so far. I was actually on team mom, get her out of the house while she is still able and wants to socialize, before I read Cynbar's post and then I remembered being exactly where your aunt seems to be, with trying to balance chaos from a LO who didn't/doesn't realize he is impaired. I was and sometimes still am, the warden in his eyes. The person standing between him and his freedom to go and do, as he chooses. I hope your mom is not a wanderer as my DH is. Every day, he is exit seeking and is eyes-on supervision for that reason. I'd. hate for her to become restless by not having enough to keep her busy.
Are there things she might like to do at home, even in this adjustment period post-relocation? Even if she doesn't do them perfectly, I can attest that idle hands for my PWD at least, are a recipe for rummaging, anxiety, multiple attempts to open the door and go, and general agitation. While the oven and lawnmower and knives, etc. are off limits, but there are still things he can do without too much mess or extra work for me, and it is important for his quality of life (and mine) that he be allowed+supported to do them. (I don't succeed at that every day by a long shot, but try.)
There may be a concern about having strangers in, given COVID concerns. That is wise of your aunt, if so. I have basically crossed my fingers and hoped our vaccines and masks will protect us, as I have to have in-home help to occupy my DH a bit, or at least be a companion for line-of-sight observation and conversation while I work in a different room, or run errands etc. since he has REFUSED to go anywhere with me for the last several months and I can't be 100% housebound.
One thing that experienced dementia support or the assessment person can do, is provide hints on safety proofing the house, etc. as well as dementia-appropriate activities, and resources. Your aunt may appreciate that. There are lots of tips on these boards too, that helped me so much. It does seem like it may help your aunt not burn out faster if she can accept some in home support even part time, with it being clear that she is in charge, not the PWD. That said, who is the official decision-maker for bigger issues you will be facing sooner or later? Meaning, who has POA for finances and for health/medical decisions for your mom? Best to sort that out now. Since there are differences of opinion already, it will be important to avoid potential hiccups (or drama) down the road. Search this forum. Lots of stories and examples to consider as you move forward. Good luck to you all!
0 -
Welcome. Another piece to consider here is your aunt's health and cognitive abilities- is she up to being the full time primary caregiver? Its an exhausting job under the best of circumstances, but she may have difficulty seeing her own limitations also. That's another factor here, and you may need a backup plan for both of them.0
-
Thank you all for taking the time to respond. I am guessing as far as the stage 5. I have definitely been reading and reading. And honestly mom knows she couldn’t do a book club and is a bit wary of even walking more than ten feet from the front of her apartment for fear of getting lost. She is fine to go with me for coffee or a haircut. As far as the help I am fine with it being someone who just sits with my mom, helps her do a task in her home or takes her to the activities provided at the facility. I just see that she isn’t allowed to do anything on her own. She wants to help unpack or fold her own things. I don’t care if it isn’t perfect but I feel like my aunt struggles to let anything go. If my mom moves my aunt is directing everything. When I am there I let her wander a bit to find the bathroom or struggle to take her jacket off. Not because I am mean, but just because I know she is safe and she may be able to get it done on her own. I will ask if she would like help or let her know I can help if she wants and she will ask when she needs it. My aunt is a saint for taking care of my mom full time and I lover her so much. It’s hard being in the middle. Whenever I take my mom or spend time with her she will kind of melt and tell me about how she got in trouble. I do see and hear the anger in my aunts voice that my mom misplaced her glasses for the 100th time. My mom gets angry and she will vent to me but always says how much she appreciates her sister even after venting. So I am NOT here to bash anything my aunt is doing. I just want to know how to best help my mom and aunt. My aunt Lois so overwhelmed and angry which isn’t like her usually. Totally understandable given the circumstances of course. I was hoping that having help would give my aunt a break, let her see how a caregiver would work with my mom and it would give my mom someone to talk to and support her in doing things that she may still be able to do.0
-
I absolutely agree. Thank you so much for taking time to read and respond0
-
M1 wrote:Welcome. Another piece to consider here is your aunt's health and cognitive abilities- is she up to being the full time primary caregiver? Its an exhausting job under the best of circumstances, but she may have difficulty seeing her own limitations also. That's another factor here, and you may need a backup plan for both of them.
I absolutely agree. I was able to get us at least set up with home health so that is good.
0 -
Emily 123 wrote:Thank you so much for taking the time to respond. Definitely things for me to think about.
Hi,
I think it's great that you are able to help your aunt with your mother's care and give her some breaks. That said, I would recommend falling in with what your aunt prefers. If you browse the threads, you will see that people note a period of 6 weeks to 3 months for a person with AD to adjust to a new environment or routine. With no short term memory the PWD is unable to save new information and store it. That includes not just things they are told, but even things they see. For instance, I think that when my mom came to live with me she could see family belongings (a vase, my grandmother's tea set) that she could remember she had given me a long time ago, and so even though she could not recognize my home for weeks, she knew that she must be in my house.
Additionally, your mom may not realize the limitations of the disease. If she's stage 5 her executive ability has been severly affected.
https://tamcummings.com/stages-of-dementia/
http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf
Though she thinks she can, her ability to initiate and follow through with things is quite diminished--and that's ok. She does not necessarily have to be kept active at all times. It takes a lot of focus to navigate the day and there's only have so much bandwidth they can use to do that. Routine is their friend. Routine let's them be successful.
Multi-step or new tasks will be a challenge for her. However, often the AD will take away the ability to recognize this (anosognosia). Still, your mom will retain the feeling that she wants to do more--just like she used to do--and this is what you're hearing about. My mom says she's bored at her AL, but when pushed will avoid going outside her comfort zone. So. After discussing it with your aunt, I think you can respect your mother's wishes by taking her to the library and checking out some books for her, but you should be responsible for the entire process, including getting the books back on time. Chances are she will forget that you have done this. Do not create more work for your aunt--she has a lot on her plate as it is. As primary caregiver, the caregiving should go at her pace unless she becomes overwhelmed. Ask her what she needs--I think if you would talk her into going away for a weekend, and you were to stay with your mother, you would see that a lot of her autonomy has gone-she won't realize it, but at stage 5 you will be giving a lot of cues--your mom may be aware of this guidance and not like it, or the change in the dynamic with her sister.
0 -
Cynbar wrote:Thank you so much for taking the time to respond. My mom never was great in a crowd and preferred one on one time with people. I think even having a caregiver sit with her would be good at this point. Just someone she can talk to.I think it's great that you moved your mother and aunt close to you so you could help out! This will become even more important as your mom declines. Your aunt has a really big job on her plate, no one really understands what it is like until they have done it (you will see this theme over and over again here on these boards.) I agree that establishing a routine for a person with dementia is crucial and that may be what your aunt is going for here. Bringing in strangers for care will be another disruption and will likely need to be done slowly and carefully. But there is something else to consider here. Dementia is about so much more than memory loss, it is also about increasing problems with executive function, reasoning and safety. If your mother is in stage 5, she probably doesn't realize she can no longer handle things she used to enjoy, like book clubs and other forms of socialization. Do read up on anosognosia. Have you considered a day program a couple days a week, once she settles in? There, the activities will be geared to her abilities . Participants in groups without cognitive deficits can shun PWD who can't keep up, making them even more unhappy. It is normal for a PWD to feel they are a prisoner, are being told what to do --- they don't understand that they can't go out when they want, that they need reminders and help with so many things. Your aunt probably doesn't want her to help because she can't complete tasks , or does them poorly. Sadly, there are unhappy times when a person feels everything is slipping away. Sometimes the best thing we can do for our LO and her caregiver is offer a sympathetic ear.
0 -
ButterflyWings wrote:Thank you so much for responding. I do think mom needs something to keep her occupied. She isn’t wandering so that is good. Maybe I can just broach that subject with my aunt. Come up with some tasks mom can do. Folding towels. Washing dishes. Anything would be good at this point.
Daughter - Welcome to this group that no one wants to join, but we benefit so much from the caring wisdom shared. Do read the Understanding Dementia - by Ghent-Fuller article that Emily shared, if you have not already. It is a great summary of what may be in the future, though every PWD is different. Would your aunt consider it also?
I think you have received excellent guidance so far. I was actually on team mom, get her out of the house while she is still able and wants to socialize, before I read Cynbar's post and then I remembered being exactly where your aunt seems to be, with trying to balance chaos from a LO who didn't/doesn't realize he is impaired. I was and sometimes still am, the warden in his eyes. The person standing between him and his freedom to go and do, as he chooses. I hope your mom is not a wanderer as my DH is. Every day, he is exit seeking and is eyes-on supervision for that reason. I'd. hate for her to become restless by not having enough to keep her busy.
Are there things she might like to do at home, even in this adjustment period post-relocation? Even if she doesn't do them perfectly, I can attest that idle hands for my PWD at least, are a recipe for rummaging, anxiety, multiple attempts to open the door and go, and general agitation. While the oven and lawnmower and knives, etc. are off limits, but there are still things he can do without too much mess or extra work for me, and it is important for his quality of life (and mine) that he be allowed+supported to do them. (I don't succeed at that every day by a long shot, but try.)
There may be a concern about having strangers in, given COVID concerns. That is wise of your aunt, if so. I have basically crossed my fingers and hoped our vaccines and masks will protect us, as I have to have in-home help to occupy my DH a bit, or at least be a companion for line-of-sight observation and conversation while I work in a different room, or run errands etc. since he has REFUSED to go anywhere with me for the last several months and I can't be 100% housebound.
One thing that experienced dementia support or the assessment person can do, is provide hints on safety proofing the house, etc. as well as dementia-appropriate activities, and resources. Your aunt may appreciate that. There are lots of tips on these boards too, that helped me so much. It does seem like it may help your aunt not burn out faster if she can accept some in home support even part time, with it being clear that she is in charge, not the PWD. That said, who is the official decision-maker for bigger issues you will be facing sooner or later? Meaning, who has POA for finances and for health/medical decisions for your mom? Best to sort that out now. Since there are differences of opinion already, it will be important to avoid potential hiccups (or drama) down the road. Search this forum. Lots of stories and examples to consider as you move forward. Good luck to you all!
0 -
My mom was like your mom and Dad was like your aunt (re: go-and-do vs homebody). You're in my prayers. Moving my parents into an Independent Living facility was our first step. Although it was a hard decision for Dad, it was a HUGE relief for me and siblings and Mom enjoyed all the activities. As Mom's aphasia and dementia, and Dad's physical capabilities, got worse we needed to move them to AL. Both were very resistant but Dad acknowledged that he couldn't help Mom as much as she needed. And Mom acknowledged that she couldn't help Dad as much as he needed. So, they did it for each other. It is not uncommon for the live-in family caregiver to die before the PWD. It is physically exhausting. Mom passed away in June at the age of 91. Dad is still hanging in there at 93. Regarding mental and physical stimulation: If ordered by her doctor for Home Health, Medicare will cover Occupational (small muscle dexterity), Speech (reading\speech) and Physical Therapy (large muscle exercise). Added benefit is additional eyes on your LO. Our Home Health company also has a Hospice side. So, when we had to transfer to Hospice, we had continuity of care - another HUGE benefit that MC acknowledged.0
-
Thank you for clarifying-- No bashing going on here-you are trying to do what's best for mom. You are right to let your mom still try to do things on her own and figure them out at her own pace. She sounds very much like she's where my mom was about a year ago. Even with my mom being fairly low maintenence I really struggled with work/caregiving. The move to a dementia focused AL let us go back to being mother-daughter, and allowed her to maintain her sense of independence.
As M1 notes, it's a lot for anyone, especially if they're 80. I wouldn't like having another family caregiver stifling my mom, but maybe your aunt's at the end of her rope. It's exhausting and it's 24/7--when you're not caregiving, you're thinking about the caregiving. And given the disparate personalities in the new home (and that your mom's disoriented and so needs more cueing), a win-win might be sitting down with your aunt and telling her what a saint she is but that you see the stress. Does she think she will be able to regain her equilibrium once your mom settles in and she gets aides? (and wrangling home health is another chore.) What is the plan for when mom starts to require a lot more care? It's a loving thing you both are trying to do, but your mom's needs may have outpaced what your aunt and you can provide at this point in your lives, and perhaps alternatives should be considered. Everyone's needs (yours too) have value. Maybe she gets to go back to her old town and friends, and mom stays closer to you. Or mom goes into AL and auntie is nearby. Your aunt sounds like she's already stressed and trying to anticipate or control the chaos by keeping your mom pretty regimented. You really don't know how these things will work out until you try, but seeing the dynamic now, and knowing that your mom's needs will increase certainly gives you something to consider moving forward.
0 -
quartlow2 wrote:My mom was like your mom and Dad was like your aunt (re: go-and-do vs homebody). You're in my prayers. Moving my parents into an Independent Living facility was our first step. Although it was a hard decision for Dad, it was a HUGE relief for me and siblings and Mom enjoyed all the activities. As Mom's aphasia and dementia, and Dad's physical capabilities, got worse we needed to move them to AL. Both were very resistant but Dad acknowledged that he couldn't help Mom as much as she needed. And Mom acknowledged that she couldn't help Dad as much as he needed. So, they did it for each other. It is not uncommon for the live-in family caregiver to die before the PWD. It is physically exhausting. Mom passed away in June at the age of 91. Dad is still hanging in there at 93. Regarding mental and physical stimulation: If ordered by her doctor for Home Health, Medicare will cover Occupational (small muscle dexterity), Speech (reading\speech) and Physical Therapy (large muscle exercise). Added benefit is additional eyes on your LO. Our Home Health company also has a Hospice side. So, when we had to transfer to Hospice, we had continuity of care - another HUGE benefit that MC acknowledged.Thank you so much for your reply asking a doctor if they would recommend any therapy services is a great idea. I definitely worry about my aunt. She is 77 and my mom 67. The weight of it all can be huge. I will work on how and when to talk with my aunt again about accepting more help. Thanks so much!
Thanks
Thank you
0 -
Emily 123 wrote:
Thank you for clarifying-- No bashing going on here-you are trying to do what's best for mom. You are right to let your mom still try to do things on her own and figure them out at her own pace. She sounds very much like she's where my mom was about a year ago. Even with my mom being fairly low maintenence I really struggled with work/caregiving. The move to a dementia focused AL let us go back to being mother-daughter, and allowed her to maintain her sense of independence.
As M1 notes, it's a lot for anyone, especially if they're 80. I wouldn't like having another family caregiver stifling my mom, but maybe your aunt's at the end of her rope. It's exhausting and it's 24/7--when you're not caregiving, you're thinking about the caregiving. And given the disparate personalities in the new home (and that your mom's disoriented and so needs more cueing), a win-win might be sitting down with your aunt and telling her what a saint she is but that you see the stress. Does she think she will be able to regain her equilibrium once your mom settles in and she gets aides? (and wrangling home health is another chore.) What is the plan for when mom starts to require a lot more care? It's a loving thing you both are trying to do, but your mom's needs may have outpaced what your aunt and you can provide at this point in your lives, and perhaps alternatives should be considered. Everyone's needs (yours too) have value. Maybe she gets to go back to her old town and friends, and mom stays closer to you. Or mom goes into AL and auntie is nearby. Your aunt sounds like she's already stressed and trying to anticipate or control the chaos by keeping your mom pretty regimented. You really don't know how these things will work out until you try, but seeing the dynamic now, and knowing that your mom's needs will increase certainly gives you something to consider moving forward.
Thank you so much for taking the time to reply. I will definitely work to meet with my aunts again and discuss these things specifically. Praying she knows my heart is in a good place for them both and that we all need the help.
0 -
"folding towels" reminded me that there are certain behaviors that the trained eye recognizes and knows how to respond to. My OT friend noticed her patient folding a blanket over and over again. So she brought a pile of washcloths with her next time and asked the patient to help her fold them while they talked together. So that is the very helpful part about trained caregivers. BUT family knows your mom better than anyone else. Her sister knows her in different ways than you do but not necessarily better than you. Trust your instincts. Don't be afraid to ask a question that you think might be looked at as having an obvious answer. If you know one dementia patient, you know ONE dementia patient. EVERYONE is different. You and your aunt are her biggest advocates. If you notice your Mom is not acting like herself, talk to her Dr or Home Health or whatever trained professional you have. It could be a sign of a UTI. Did you know that a UTI can make you confused? I didn't! And, how do you know when a dementia patient is "confused"? I'm still trying to figure that out! I learned that we lose our eyesight, hearing, smell (and taste) and physical touch but our emotions remain. When Mom couldn't understand what people were telling her, she'd take cues from facial expressions; which COVID restrictions complicated. She wouldn't always understand me over the phone but she'd laugh when she heard me laugh. In person, she could always tell when someone was being kind to her by their tone of voice. Likewise, when my frustration level rose, she got embarrassed or mad.0
-
quartlow2 wrote:"folding towels" reminded me that there are certain behaviors that the trained eye recognizes and knows how to respond to. My OT friend noticed her patient folding a blanket over and over again. So she brought a pile of washcloths with her next time and asked the patient to help her fold them while they talked together. So that is the very helpful part about trained caregivers. BUT family knows your mom better than anyone else. Her sister knows her in different ways than you do but not necessarily better than you. Trust your instincts. Don't be afraid to ask a question that you think might be looked at as having an obvious answer. If you know one dementia patient, you know ONE dementia patient. EVERYONE is different. You and your aunt are her biggest advocates. If you notice your Mom is not acting like herself, talk to her Dr or Home Health or whatever trained professional you have. It could be a sign of a UTI. Did you know that a UTI can make you confused? I didn't! And, how do you know when a dementia patient is "confused"? I'm still trying to figure that out! I learned that we lose our eyesight, hearing, smell (and taste) and physical touch but our emotions remain. When Mom couldn't understand what people were telling her, she'd take cues from facial expressions; which COVID restrictions complicated. She wouldn't always understand me over the phone but she'd laugh when she heard me laugh. In person, she could always tell when someone was being kind to her by their tone of voice. Likewise, when my frustration level rose, she got embarrassed or mad.
You sound like such a sweet daughter. Thanks again for your words. All of this support means a ton. I did know about the UTI ability only after visiting different IL and AL places. My mon looks blind but can hear anything lol
Definitely going to chat with aunt and mom and hopefully get on the same page.
0 -
You have gotten some wonderful insight. I did not read everything throughly so the is may be a repeat idea....approach you Aunt with saying that you want some relief for her and ask her to tell you when she would like to start some "time off".0
-
jfkoc wrote:You have gotten some wonderful insight. I did not read everything throughly so the is may be a repeat idea....approach you Aunt with saying that you want some relief for her and ask her to tell you when she would like to start some "time off".
Perfect idea. thanks so much. What an amazing group of people. I’m just overwhelmed with gratitude.
0 -
Thank you all! What an amazing group of people and so much support. I’m overwhelmed with gratitude. Thank you all and prayers for each of you.
0 -
Welcome Daughter80. I like the idea of you being respite for your aunt. I don't like the idea of going to the library to check out books. She probably won't read them and definitely will lose them. You might get some interesting picture books from a thrift store. When places open up again, an adult day care canter may be useful. In the meantime, when you visit, you can be the activity director. There are many threads on activities for PWDs (persons with dementia). Can she fold towels? Get some from a dollar store.
Iris L.
0 -
Hi Daughter,
I’ve been the main daytime caregiver for my mother-in-law for 4 years now. I also have 5 sons. Two are in college. I’m a busy person who likes to accomplish many things. I have also spent most of my life making things “right.” While I’ve learned to live with the mess that a 5 boy cattle ranching household is I’ve not learned to cope with incorrect behavior. I’ve spent 22 years teaching and correcting these children. That means that incorrect, weird or confused behavior must be addressed. The things I see her do are also huge reminders of the dementia which must be acknowledged and processed in my brain. If I can correct or prevent a mess, mishap or weird thing from happening I feel better…more in control. None of my efforts really work. They make her frustrated and me upset. Anyway, recognizing that the control issue is my problem has allowed me to let go and do things like allow her to eat with her hands, pick up everything she doesn’t recognize, pace constantly. I just have to watch her so she doesn’t hide things I need like the tv or bidet remotes or my phone! I’ve also had to accept that there really isn’t any fixing of this situation. I’m currently trapped in the dilemma about her walker. Do I constantly make her use the walker as she paces (she basically spends the day pacing and leaving her walker behind) or do I let her happily reel around the house without it?
So just support your aunt and do your best to let your mom have her freedom by taking her out or spending more time with your mom while your aunt gets a break.
0 -
So - the old 'want to respect her wishes' is something that caregivers tend to torment themselves with - unecessarily. Because those 'wishes' were often poorly thought out, reflexive emotional responses to another elderly relatives health decline - no one wants to age, get dementia, require care.
But it can happen. So the impulsive words linger in the adult caregivers mind for years. Making us feel like crap.
But - we have to deal with the reality of what is NOW. Those words were spoken by the PWD at a time they had no idea what the future would hold.
At Stage 5, it is highly unlikely that your Aunt is able to participate in a book club. Unless it was run specifically for a PWD. It can also be a kind thing to defer attempted involvement where she will not succeed, but may have the cognitive reserve to understand she is being treated differently or poorly. It is also unlikely a regular book club would be willing to absorb a pwd.
With the caregiving aunt so much older, you must view this arrangement as very temporary. Research area care options, including facilities with Memory Care and nursing homes. You will need a nursing home at some point at least for short term rehabilitation after a hospital stay.
Having a handle on area care options can come in handy in case things are in such a position that placement is needed. Conversely, it can also help to know for when you need respite for in home care (a week or two for a break or if you go away)
It is very wonderful that you are helping your aunt.
0 -
So daughter, it sounds overall like the living arrangement may not be sustainable, really, and it sounds to me like your aunt may be more of the problem than your mother: I bet my bottom dollar your mother would love a MC facility, the company, the activities, etc. But moving your mom would leave your aunt on her own, and that may not work for her for very long. Who has POA for your aunt? Anyone? It does seem like--if family finances allow--maybe moving both of them to a facility that had MC for your mother and perhaps independent or minimally assisted living for your aunt might be a good idea for both of them. Your mother may be exactly right when she tells you she is feeling like a prisoner, and it may be that appealing to your aunt to consider the move for the good of both of them might be a potential strategy.
If you are able to bring home health in, those folks may be able to give you more of a feel for what is going on. I don't envy you, these are delicate situations and dynamics.
0 -
Thanks so much for sharing. I will definitely support my aunt and do all I can for my mom. I appreciate hearing your story.
0 -
RanchersWife wrote:
Hi Daughter,
I’ve been the main daytime caregiver for my mother-in-law for 4 years now. I also have 5 sons. Two are in college. I’m a busy person who likes to accomplish many things. I have also spent most of my life making things “right.” While I’ve learned to live with the mess that a 5 boy cattle ranching household is I’ve not learned to cope with incorrect behavior. I’ve spent 22 years teaching and correcting these children. That means that incorrect, weird or confused behavior must be addressed. The things I see her do are also huge reminders of the dementia which must be acknowledged and processed in my brain. If I can correct or prevent a mess, mishap or weird thing from happening I feel better…more in control. None of my efforts really work. They make her frustrated and me upset. Anyway, recognizing that the control issue is my problem has allowed me to let go and do things like allow her to eat with her hands, pick up everything she doesn’t recognize, pace constantly. I just have to watch her so she doesn’t hide things I need like the tv or bidet remotes or my phone! I’ve also had to accept that there really isn’t any fixing of this situation. I’m currently trapped in the dilemma about her walker. Do I constantly make her use the walker as she paces (she basically spends the day pacing and leaving her walker behind) or do I let her happily reel around the house without it?
So just support your aunt and do your best to let your mom have her freedom by taking her out or spending more time with your mom while your aunt gets a break.
Thanks so much for taking the time to respond and share your story. Great advice thanks again
0 -
King Boo wrote:
So - the old 'want to respect her wishes' is something that caregivers tend to torment themselves with - unecessarily. Because those 'wishes' were often poorly thought out, reflexive emotional responses to another elderly relatives health decline - no one wants to age, get dementia, require care.
But it can happen. So the impulsive words linger in the adult caregivers mind for years. Making us feel like crap.
But - we have to deal with the reality of what is NOW. Those words were spoken by the PWD at a time they had no idea what the future would hold.
At Stage 5, it is highly unlikely that your Aunt is able to participate in a book club. Unless it was run specifically for a PWD. It can also be a kind thing to defer attempted involvement where she will not succeed, but may have the cognitive reserve to understand she is being treated differently or poorly. It is also unlikely a regular book club would be willing to absorb a pwd.
With the caregiving aunt so much older, you must view this arrangement as very temporary. Research area care options, including facilities with Memory Care and nursing homes. You will need a nursing home at some point at least for short term rehabilitation after a hospital stay.
Having a handle on area care options can come in handy in case things are in such a position that placement is needed. Conversely, it can also help to know for when you need respite for in home care (a week or two for a break or if you go away)
It is very wonderful that you are helping your aunt.
Thanks so much. I am working to put some things in place as far as care and activities that are doable now.
0 -
M1 wrote:
So daughter, it sounds overall like the living arrangement may not be sustainable, really, and it sounds to me like your aunt may be more of the problem than your mother: I bet my bottom dollar your mother would love a MC facility, the company, the activities, etc. But moving your mom would leave your aunt on her own, and that may not work for her for very long. Who has POA for your aunt? Anyone? It does seem like--if family finances allow--maybe moving both of them to a facility that had MC for your mother and perhaps independent or minimally assisted living for your aunt might be a good idea for both of them. Your mother may be exactly right when she tells you she is feeling like a prisoner, and it may be that appealing to your aunt to consider the move for the good of both of them might be a potential strategy.
If you are able to bring home health in, those folks may be able to give you more of a feel for what is going on. I don't envy you, these are delicate situations and dynamics.
Thank you for taking the time to respond. We met with home health last week and at least have all of our information and deposit set so as soon as we are all on board for care, it can begin. I have visited many facilities and feel like I know our next place, but haven’t gone in and visited the memory care unit specifically. I just wasn’t ready when I started looking. I knew it was there and that was enough for me at the time. It has only been 4 months since diagnosis and things seem to be happening so fast. I was thinking that I should start going in to see these facilities if it is possible.
0
Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more
Categories
- All Categories
- 470 Living With Alzheimer's or Dementia
- 237 I Am Living With Alzheimer's or Other Dementia
- 233 I Am Living With Younger Onset Alzheimer's
- 14.1K Supporting Someone Living with Dementia
- 5.2K I Am a Caregiver (General Topics)
- 6.8K Caring For a Spouse or Partner
- 1.8K Caring for a Parent
- 156 Caring Long Distance
- 104 Supporting Those Who Have Lost Someone
- 11 Discusiones en Español
- 2 Vivir con Alzheimer u Otra Demencia
- 1 Vivo con Alzheimer u Otra Demencia
- 1 Vivo con Alzheimer de Inicio Más Joven
- 9 Prestación de Cuidado
- 2 Soy Cuidador (Temas Generales)
- 6 Cuidar de un Padre
- 22 ALZConnected Resources
- View Discussions For People Living with Dementia
- View Discussions for Caregivers
- Discusiones en Español
- Browse All Discussions
- Dementia Resources
- 6 Account Assistance
- 16 Help