Re: Caring for a caregiver

MarleneB13 · ‎01-02-2018

My mother has been with her partner for over 40 years and has been caregiver for over 5 years. She is in her 80's and her partner, ten years her junior, is disabled and is in a declining stage of dementia. They receive medical care via a visiting PA and for a few months now live in a senior housing building. Neither of them leave the apartment and with the exception of my weekly visit and their PA every 6 weeks, see no one else. My mother has applied to get in house assistance to bathe her partner, and perform various home tasks, but it has not begun yet.

I am in my 60's and brand new at being a parent to my parent. I am helping by doing their marketing, laundry and bringing a few home cooked meals each week (my mom doesn't cook using the stovetop, but does use the microwave).

My mom is tired, does not always get to sleep through the night due to her partner in the next room waking her with confused talking, crying. Her partner is fogetting more and more each day, which frustrates my mom and they have days of disagreements. I worry about how long she can deal with this situation and what warning signs, if any, that I need to be aware of. Any advice is appreciated.

JeanettaS336543 · ‎09-26-2018

I am in a difficult situation my male friend and I share an apartment together in order to help with bills, we have separate bedroom. We are both on SSDI. I have a lot physical issues. But still can drive my friend has a seizure disorder and depends on me a lot . I have to take him to store, dr, pharmacy, etc. he needs someone to help him during a seizure My medical problems central nervous system disease, 3 spine and neck surgery, fibromyalgia and many other issues to mention. I get tired easy but I can't seem to get rest because of my friends demanding needs. The reason for our living arrangements, been on a very long waiting list for low income housing for years. So we put our resources together my friend is 65 years old and I am 57 years old. I believe I could make by myself barely, but I know he could'nt not just the money, he depends on me to help him do paper work etc. I have known him for over 6 years. I just can not help him I love him like a brother but I believe my health is suffering. Do you have any suggestion thank you jane

JaneCares · ‎10-08-2018

@JeanettaS336543 wrote:
I am in a difficult situation my male friend and I share an apartment together in order to help with bills, we have separate bedroom. We are both on SSDI. I have a lot physical issues. But still can drive my friend has a seizure disorder and depends on me a lot . I have to take him to store, dr, pharmacy, etc. he needs someone to help him during a seizure My medical problems central nervous system disease, 3 spine and neck surgery, fibromyalgia and many other issues to mention. I get tired easy but I can't seem to get rest because of my friends demanding needs. The reason for our living arrangements, been on a very long waiting list for low income housing for years. So we put our resources together my friend is 65 years old and I am 57 years old. I believe I could make by myself barely, but I know he could'nt not just the money, he depends on me to help him do paper work etc. I have known him for over 6 years. I just can not help him I love him like a brother but I believe my health is suffering. Do you have any suggestion thank you jane

Hi Jeanetta,

Wow is he a lucky guy. It does make sense to combine your income and share a place. But not to the point where the helping is so lopsided. Good for you for trying to figure out how to care for yourself and rest.

Have either of you contacted your local area agency for aging? you're too young but he's eligible. If you go to www.eldercare.gov and type in your zip code, you'll find the agency, and give them a call. Perhaps a case worker can come visit you both in your apartment, since you already do so much schlepping of him all over town. See what they can provide, from meals on wheels, to transportation to the doctor, perhaps a once a week adult day program, to give you a break. Is there home care that he could receive? Does he have Medicaid in addition to Medicare? Ask a lot of questions and see what they have going.

Does he have ANY family? Could one person start helping even one day a month to hang out with him, take him places? Cousin, sibling, anyone? Even if they are far away, perhaps they are willing to help financially or to visit occasionally. Family really needs to step up, in my opinion, when a member is ailing, if at all possible, no matter how distant they are geographically or by relation. You are certainly acting like family to your brother/friend. Perhaps there is some blood relation that will be willing to chip in.

Meanwhile, what can you do to give yourself a break? Think creatively about things that give you pleasure and takes your mind off your own issues and his. I personally would go to a matinee of a movie once a week. As it is, i'm not an active caregiver at the moment, and i watch movies on netflix on my computer. If i had the money i'd also get a therapeutic massage as often as humanly possible. and, i knit, and it's possible to find very cheap yarn. What works for you?

Does any of this make sense and/or sound possible for you both?

Please write more. And maybe others have ideas, too.

All the best to you Jeanetta. You are an amazing person.

Jane

JeanS245266 · ‎01-10-2018

Hello, my name is Jean and I have been a Physical Therapist Assistant for 30 years and have recently dealt with caring for my Mom, who passed away this summer at the age of 97. My sister and I were the main caregivers for my Mom and Dad for over 40 years, as they lived in Wisconsin and my sister and I, in Illinois. I am also work as a agency caregiver 16 to 20 hours a week. The first thing I would suggest is possibly checking out sending your mom''s partner to a Day Rehab facility where people can get therapy if needed, and be supervised, as well as have a social outing, which Medicare usually provides transportation to and from home. I would ask their doctor to make a referral or recommendation. Many hospita out patient facilities have Day Rehab units. My second suggestion, is having a caregiver come in 2 to 3 times a week to help you out and give yourself time off from becoming overwhelmed and stressed out.

All caregiver agencies have what's called "Catholic Charities Services", which provide 15 to 20 hours a week of scheduled care giver assistance depending upon income or disability or services needed. Hope this helps......More and more people are taking care of their parents at home these days as the average cost of keeping them in a long term care facility costs around 10,000 a month! My mom was in a facility that was 6300.00 a month, where the food was attrocious, and the activities very minimal. The only thing that mattered for me was that the nursing care was decent. In a long-term facility, they will take all your assets and drain all of your income! It's sad to say, it's no fun to get old. Stay positive, and use all the support u can get from friends and support staff.

mandyy807123 · ‎01-07-2018

I'd advise you to always keep an eye on your mother. Support her and as much as possible help her feel loved. You surely know her more than we do. Always try to reassure her that everything is working out together and that you love her. Also, try learning the services for the elderly . It is always better to know more about these kind of topics, especially now that you need them.

MarleneB13 · ‎01-09-2018

Thank you Mandy, I have been reearching online and talking with various agencies about getting them som in house help. Quite the learning curve for me but my mom has actually begun receiving PCA help for them; fingers crossed that this will continue. They have had help before but that was nipped in the bud after a short time. My mom realized that she cannot do everything anymore, a tough thing to accept). We talk every day and swap stories and recipes to keep her spirits up. Luckily, I also have a husband who has walked this walk with his own parent, and he has a great pair of ears and sturdy shoulders for me when I need to vent.

Thank you for your response, I wish you well.

JaneCares · ‎01-04-2018

@MarleneB13 wrote:
My mother has been with her partner for over 40 years and has been caregiver for over 5 years. She is in her 80's and her partner, ten years her junior, is disabled and is in a declining stage of dementia. They receive medical care via a visiting PA and for a few months now live in a senior housing building. Neither of them leave the apartment and with the exception of my weekly visit and their PA every 6 weeks, see no one else. My mother has applied to get in house assistance to bathe her partner, and perform various home tasks, but it has not begun yet.
I am in my 60's and brand new at being a parent to my parent. I am helping by doing their marketing, laundry and bringing a few home cooked meals each week (my mom doesn't cook using the stovetop, but does use the microwave).
My mom is tired, does not always get to sleep through the night due to her partner in the next room waking her with confused talking, crying. Her partner is fogetting more and more each day, which frustrates my mom and they have days of disagreements. I worry about how long she can deal with this situation and what warning signs, if any, that I need to be aware of. Any advice is appreciated.

Oh my, you and your mother have your hands full, don't you? Does your mother's partner have any relatives? This would be a time to reach out to anyone within a 1,000 mile radius. Seriously, does the partner have any kinfolk who could come and visit, get a motel room for a few days, and visit? Thereby giving your mother a little bit of a break, to visit with you, even stay with you for a night or two so she could sleep through the night? Does her partner have any siblings or nieces or nephews? I don't know if anyone would respond but it might be worth a try.

Since your mom doesn't cook much, are there any meal programs that could deliver food, like meals on wheels, or something else in the building that's offered?

Does your mom and her partner have any community around them at all? Back when they were both much healthier, was there a church or temple they attended, or a bridge club or a hiking group or ANYthing that might have folks in it that remember them? Sometimes it pays to be very creative and cast a wide net to see who else might come visit besides you.

I worked as a care manager and one of my colleagues had a client who was living in assisted living, very demented, no family, and somehow she found a former employee, who started to visit and eventually became the man's guardian?

Since you avoid using a pronoun, i wonder if your mother and her partner are gay. (I am gay, for the record, and with a much older partner who has MS.) The reason I ask is that most bigger cities have some sort of gay community center, and volunteers who can do things for elderly gay folks. Worth a try. There's a national group called SAGEUSA which could steer you.

Otherwise, i think your mom is lucky to have you keeping an eye out for her, and any way you can give her a break is a good thing. Make sure she isn't neglecting her health: get to her doctor and go with her so her doc knows what she's doing, how hard her home life is with caregiving 24/7.

Is any of this helpful? Please write back. What are your most serious concerns?

You are a very generous daughter

Jane

MarleneB13 · ‎01-09-2018

Hi Jane, First, let me thnk you for responding. I know that our situation is not unique, but its comforting to write with someone.

To your question regarding family, no, she has no family involved in her life, for reasons that I cannot divulge.They have never been involved in any church or community events; and as they got older they cocooned in their home and even stopped attending family get togethers. Each one blamed the other for not going outside the home until physically, they couldn't (unless by ambulance for my mom's partner).

The brighter news is that they have begun receiving assstance from a PCA, and chore assistant that visit 3 times a week.

They also have their hairdresser, podiatrist, physician assistant and veterinarian come to the apartment once a month. My biggest fear was that they would isolate themselves even more than before, but with encouragement, my mom has reached out and been successful in getting outside contact/help. I truly hope that these working relationships continue; they need the help and certainly the interaction with others.

Thank you again for your response, encouragement and advice. I am still learning and will continue to hope for happy days and peaceful nights for them.

My best to you.

JaneCares · ‎01-13-2018

@MarleneB13 wrote:
Hi Jane, First, let me thnk you for responding. I know that our situation is not unique, but its comforting to write with someone.
To your question regarding family, no, she has no family involved in her life, for reasons that I cannot divulge.They have never been involved in any church or community events; and as they got older they cocooned in their home and even stopped attending family get togethers. Each one blamed the other for not going outside the home until physically, they couldn't (unless by ambulance for my mom's partner).
The brighter news is that they have begun receiving assstance from a PCA, and chore assistant that visit 3 times a week.
They also have their hairdresser, podiatrist, physician assistant and veterinarian come to the apartment once a month. My biggest fear was that they would isolate themselves even more than before, but with encouragement, my mom has reached out and been successful in getting outside contact/help. I truly hope that these working relationships continue; they need the help and certainly the interaction with others.

Thank you again for your response, encouragement and advice. I am still learning and will continue to hope for happy days and peaceful nights for them.
My best to you.

hi Marlene, wow this sounds like real progress. I'm so glad you are involved, and that your mom and her partner are now receiving services. She is so lucky to have you in her life! So now there is a team of people keeping an eye on them both! People do isolate, and now she's opening up: that is fabulous. A blessing.

Thank you for the update! Keep letting us know how things are going, as we all can learn from you!

Jane