Meet fellow Caregivers - Introduce yourself

Welcome to the Caregivers group on Mayo Clinic Connect.
Caring for someone can be rewarding, but it is also very demanding and can be isolating. Let’s use this space to connect with other caregivers, share experiences, talk frankly about the tough stuff without judgement and to provide a virtual shoulder to lean on.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. I look forwarding to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Grab a cup of tea, or beverage of you choice, and let’s chat. Why not start by introducing yourself?

@colleenyoung

Hi @kathymcl, It looks like your message got cut off. How are you doing?

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I’m actually feeling a tad overwhelmed. Mom’s dementia was recently diagnosed with Alzheimer’s. She seemed to take a turn for the worse in October and since the beginning of November has really crashed it seems. Home Care was giving her 30 minutes 2x/week for a morning shower. I took her to Emerg one day last week and they did what’s called a GEM (Geriatric Emergency Management) Assessment and the doc and nurse said both she and I need more support. I called the home care people to assess her again and they have now agreed to 30 min each a.m. and each p.m. 7 days a week for showering, dressing, hearing aids, putting her compression stockings on. They also told me that she is now considered what they call here in Canada as a ‘crisis placement’ which means she is eligible for a top of the list position in a long term care facility. I haven’t told her that my husband and I have been running around looking at different places to figure out a short list to take her to see as yet. She and I are heading to Mexico mid-January where she will stay for 3 weeks with another family member bringing her back home. My husband and I return to Canada on April 4. We found her current Senior’s Residence the same way. We picked 9, short-listed down to 3 and that’s where she has been for the last couple of years. The only thing is we are feeling a bit misled with the current place as we asked at the time whether she could stay through ‘end of life’ management. They had told us yes, but it turns it they don’t have a locked floor; you just pay them privately for personal care on top of her already pricey monthly fee, so it’s an a la cart menu; e.g. if they have to remind her it’s mealtime, that costs $8.75 plus tax which includes bringing her down and returning her to her suite after each meal, etc etc; medication giving costs $240/month but more if she doesn’t come to the nurse’s station to receive, rather than them come to her. We are going to suck up whatever extra costs are involved till we come back in April.. I don’t want to see her put into a new place and me not be there to support her as I currently spend 3 or 4 days a week with her and she is depending on me more and more. It is just hard watching this once independent vital 90 year-old, once vital and independent woman not be able to find words, not remember names, looking so frail, having incontinence issues, lose so much cognition.

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@talie

I’m looking for a memory care facility using lots of different resources—digital and company services. I have talked to so many people in the “business”and read so many conflicting reviews that I feel like I’m going crazy. It took me a while to realize that for many this is a “sales” job where people get paid if they place someone in a facility they have a contract with. Also the facilities stay in business when they can convince someone to place their loved with them, so what can you really believe??? I I’ve also realized some of the “comments” online can be from people with “an axe to grind”, so again what do you believe. I can’t place my husband of almost 50 years anywhere I don’t feel 100% confident about. Any help you can give me will be hugely appreciated!! Desperately, Talie

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@talie I’m just following up to see how you’ve been doing. What do you think of the places that you’ve been looking at? Have you found anywhere that you are at least 90% confident about? I’m thinking of both you and your husband. Becky

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@kathymcl

I’m actually feeling a tad overwhelmed. Mom’s dementia was recently diagnosed with Alzheimer’s. She seemed to take a turn for the worse in October and since the beginning of November has really crashed it seems. Home Care was giving her 30 minutes 2x/week for a morning shower. I took her to Emerg one day last week and they did what’s called a GEM (Geriatric Emergency Management) Assessment and the doc and nurse said both she and I need more support. I called the home care people to assess her again and they have now agreed to 30 min each a.m. and each p.m. 7 days a week for showering, dressing, hearing aids, putting her compression stockings on. They also told me that she is now considered what they call here in Canada as a ‘crisis placement’ which means she is eligible for a top of the list position in a long term care facility. I haven’t told her that my husband and I have been running around looking at different places to figure out a short list to take her to see as yet. She and I are heading to Mexico mid-January where she will stay for 3 weeks with another family member bringing her back home. My husband and I return to Canada on April 4. We found her current Senior’s Residence the same way. We picked 9, short-listed down to 3 and that’s where she has been for the last couple of years. The only thing is we are feeling a bit misled with the current place as we asked at the time whether she could stay through ‘end of life’ management. They had told us yes, but it turns it they don’t have a locked floor; you just pay them privately for personal care on top of her already pricey monthly fee, so it’s an a la cart menu; e.g. if they have to remind her it’s mealtime, that costs $8.75 plus tax which includes bringing her down and returning her to her suite after each meal, etc etc; medication giving costs $240/month but more if she doesn’t come to the nurse’s station to receive, rather than them come to her. We are going to suck up whatever extra costs are involved till we come back in April.. I don’t want to see her put into a new place and me not be there to support her as I currently spend 3 or 4 days a week with her and she is depending on me more and more. It is just hard watching this once independent vital 90 year-old, once vital and independent woman not be able to find words, not remember names, looking so frail, having incontinence issues, lose so much cognition.

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@kathymcl and @talie, I encourage you both to follow and post in the new group dedicated to caregivers caring for someone living with dementia. Here's the link:
– Caregivers: Dementia https://connect.mayoclinic.org/group/caregivers-dementia/

Kathy, some of the situations with long-term care and the various definitions of care homes that you are describing my aunt in Canada (Ontario) also experienced. It is such a maze to figure out. Have you contacted the Alzheimer's Society of Canada? https://alzheimer.ca/en/Home
They were so helpful with my aunt.

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@colleenyoung

@kathymcl and @talie, I encourage you both to follow and post in the new group dedicated to caregivers caring for someone living with dementia. Here's the link:
– Caregivers: Dementia https://connect.mayoclinic.org/group/caregivers-dementia/

Kathy, some of the situations with long-term care and the various definitions of care homes that you are describing my aunt in Canada (Ontario) also experienced. It is such a maze to figure out. Have you contacted the Alzheimer's Society of Canada? https://alzheimer.ca/en/Home
They were so helpful with my aunt.

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Thank you. Will do.

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My name is Arlene. I am 86+ and the caretaker for my husband Jim who is 87.

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Arlene, You and I have probably have something in common. I am 84 and my husband is 89. He has been in a care center for almost 3 years now, but before that I cared for him at home for about 4 – 5 years. I miss him and try to visit every other day even though it is a 45 mile drive. We couldn't find anything closer that would accept Medicaid and had skilled nursing in their Memory units. For the last year or so he has been in the regular skilled nursing unit as he can not walk and is no risk for wandering, etc.

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@arlenejc

My name is Arlene. I am 86+ and the caretaker for my husband Jim who is 87.

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I meant caregiver. I have decisions to make as to what is the best way to take care of my husband and myself in the near future.At my age of nearly 87 and with my physical problems it is becoming too hard for me to care for Jim. Actually, I am physically internally fine. My problem is so much pain. I have chronic lower back pain and rods in my back, scoliosis, spinal stenosis, neuropathy and arthritis. I do everything that it takes to care for the two of us plus the paper work my husband always cared for. It is time to either place Jim in a memory care facility or find a live in person to do most of the chores.
I’d like some feedback from anyone who has faced a similar problem.

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@arlenejc

I meant caregiver. I have decisions to make as to what is the best way to take care of my husband and myself in the near future.At my age of nearly 87 and with my physical problems it is becoming too hard for me to care for Jim. Actually, I am physically internally fine. My problem is so much pain. I have chronic lower back pain and rods in my back, scoliosis, spinal stenosis, neuropathy and arthritis. I do everything that it takes to care for the two of us plus the paper work my husband always cared for. It is time to either place Jim in a memory care facility or find a live in person to do most of the chores.
I’d like some feedback from anyone who has faced a similar problem.

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Hi @arlenejc I am sorry to read about your husband's journey and your health issues as well. I was my wife's caregiver during her 14+ year war with brain cancer. For me caregiving sure was super demanding and having one's own health and pain issues can make it all even more overwhelming than it already is!

During my wife's illness she suffered from many dementia-like symptoms along with the physical decay from the cancer.

I know every patient, every disease, and every journey is unique, but in our case we found that home hospice was a positive solution for us. I know it is not for everyone nor is it possible for all, but I just wanted to raise it as a possible option.

Wishing you continued strength, courage, and peace!

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Thank you so much for your kind words and understanding. It helps more than I can tell you. The best to you.

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@arlenejc

I meant caregiver. I have decisions to make as to what is the best way to take care of my husband and myself in the near future.At my age of nearly 87 and with my physical problems it is becoming too hard for me to care for Jim. Actually, I am physically internally fine. My problem is so much pain. I have chronic lower back pain and rods in my back, scoliosis, spinal stenosis, neuropathy and arthritis. I do everything that it takes to care for the two of us plus the paper work my husband always cared for. It is time to either place Jim in a memory care facility or find a live in person to do most of the chores.
I’d like some feedback from anyone who has faced a similar problem.

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Hi @arlenejc, I'd like to add my welcome as well. You may also be interested in the discussions in these related groups:
– Caregivers: Dementia https://connect.mayoclinic.org/group/caregivers-dementia/
– Spine Health: https://connect.mayoclinic.org/group/spine-health/
– Scoliosis and Chronic back pain https://connect.mayoclinic.org/discussion/chronic-back-pain-2c72ae/

Arlene, you ask a good question. When is it right to consider seeking a place in a memory care facility vs getting someone to live in and help with chores and caregiving, especially as your own physical abilities limit your abilities to keep up with the increasing physicality of caregiving. I'm bring @coloradogirl @harriethodgson @maryterry and @providence1960 into this discussion too. Part of me thinks that "it depends". It depends on the availability of facilities, financial resources and the type of accommodation one can offer to having someone live-in.

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@colleenyoung

Hi @arlenejc, I'd like to add my welcome as well. You may also be interested in the discussions in these related groups:
– Caregivers: Dementia https://connect.mayoclinic.org/group/caregivers-dementia/
– Spine Health: https://connect.mayoclinic.org/group/spine-health/
– Scoliosis and Chronic back pain https://connect.mayoclinic.org/discussion/chronic-back-pain-2c72ae/

Arlene, you ask a good question. When is it right to consider seeking a place in a memory care facility vs getting someone to live in and help with chores and caregiving, especially as your own physical abilities limit your abilities to keep up with the increasing physicality of caregiving. I'm bring @coloradogirl @harriethodgson @maryterry and @providence1960 into this discussion too. Part of me thinks that "it depends". It depends on the availability of facilities, financial resources and the type of accommodation one can offer to having someone live-in.

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My mother had vascular dementia which, according to her doctor, was like Alzheimer's. When the temperature in Minnesota reached 35 below zero and the wind chill was 45 below, Mom decided to leave her studio apartment and go back to Long Island to visit friends. (All of them were deceased.) I called her physician and he wrote orders for nursing care in the same facility. This is where she died. A friend of mine opted for home hospice, did some minor renovations to facilitate this, and it went well. She hired a caregiver to spend the night with her husband so she could get some sleep. These were efficient, costly solutions. A facility that offers memory care would probably be the best solution. Before you sign up, ask about fees, such as an extra shower. Where do residents eat meals? Find out how many staff members are on at night. Is there an activities program for those in memory care?

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@arlenejc

I meant caregiver. I have decisions to make as to what is the best way to take care of my husband and myself in the near future.At my age of nearly 87 and with my physical problems it is becoming too hard for me to care for Jim. Actually, I am physically internally fine. My problem is so much pain. I have chronic lower back pain and rods in my back, scoliosis, spinal stenosis, neuropathy and arthritis. I do everything that it takes to care for the two of us plus the paper work my husband always cared for. It is time to either place Jim in a memory care facility or find a live in person to do most of the chores.
I’d like some feedback from anyone who has faced a similar problem.

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Hello, @arlenejc it certainly sounds like you have a lot of difficult decisions to make. You might want to look at this discussion from the Caregivers group. It has a list of resources that you may find helpful. https://connect.mayoclinic.org/discussion/caregiver-resources/. Check it out and see what you can find. I hope some of them help!

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@arlenejc

I meant caregiver. I have decisions to make as to what is the best way to take care of my husband and myself in the near future.At my age of nearly 87 and with my physical problems it is becoming too hard for me to care for Jim. Actually, I am physically internally fine. My problem is so much pain. I have chronic lower back pain and rods in my back, scoliosis, spinal stenosis, neuropathy and arthritis. I do everything that it takes to care for the two of us plus the paper work my husband always cared for. It is time to either place Jim in a memory care facility or find a live in person to do most of the chores.
I’d like some feedback from anyone who has faced a similar problem.

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Good morning @arlenejc I’m wondering if you have been able to find any answers/help with caring for your husband and yourself? Have you checked with the local agency on aging? They might have some good answers. How are you both doing right now?

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Hello! My name is Monica and since August (my mother passed away), I'm the primary caregiver to my 86yo father. Life as I know it has changed. I've been able to set aside many of the feelings that have surfaced because I recently sold their home and am now in the final stages of getting everything cleared out. Today I've experienced so many emotions. I've not choice but to feel my feelings because they will come out sideways.
Blessings to all! I look forward in getting to know your stories.

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@soberhoumom

Hello! My name is Monica and since August (my mother passed away), I'm the primary caregiver to my 86yo father. Life as I know it has changed. I've been able to set aside many of the feelings that have surfaced because I recently sold their home and am now in the final stages of getting everything cleared out. Today I've experienced so many emotions. I've not choice but to feel my feelings because they will come out sideways.
Blessings to all! I look forward in getting to know your stories.

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Welcome @soberhoumom We’re an online community that shares experiences, stories and helpful advice about our shared health journeys. We’re not doctors so we can’t give medical advice, just suggestions based on our own experiences. We’re you also your mother’s caregiver? It must have been so difficult for you and your father when she died. What have you done to be able to cope with all theses changes in your life?

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