Am I the right person to care for mom?

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Am I the right person to care for mom?

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My mom was diagnosed with PD in 2022. Now she's showing signs of dementia that seems to be getting worse fast. I work from home so I have someone come in to help with her 4 to 5 days a week for 4 to 6 hours a day so I can work. I have her come some Saturdays and every other Sunday 9 to 5 so my husband and I can have more than a few hours together and I can get some time off. When the caregiver is here she seems to just want to sleep and eat instead of exercising her body and mind. When she's gone. She wants to start moving around. She had hip surgery a year ago so you need to keep an eye on her. I have my own physical limitations so I'm just worried she's going to hurt herself. I KNOW its not her fault but it doesn't keep me from getting frustrated. I'm already not the most patient person and have a habit of being honest about situations. I hate that she fell and had surgery. It's been downhill since then...I'm starting to wonder if I should start preparing for care outside the home. I don't want to cause more psychological harm. Right now she's still on medicare so she's paying for the caregiver but we'll definitely need medicaid for facility care.

Care Decisions Mom Parkinson's Disease Paying for Care

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In my opinion and experience, living with our mother's does not work. I grew up with my grandmother living in my home and it was a torture chamber for all of us. My mother had no patience for her mother, and all they did was fight. It was unhealthy for them, and for me. My mother should've had the insight to get grandma placed, but both of them were so prone to histrionics and hysterics, they couldn't think straight. When mom moved away and sold her house, she sent grandma to live with another of her daughter's. My aunt had enough drama after a short time, and sent grandma to a nursing home with Medicaid.

The moral of the story is, grandma did fine there and lived to 92. That's 20 more years for your mother since she's 72. Don't put you or your husband thru this any longer, and get mom placed. Dementia adds a whole new level of horror to everyone's life. I know, my mother suffered from it for 6 years. She lived in Assisted Living and then Memory Care Assisted Living for the last 3 years of her life. She passed at 95. Elders can live a LONG time with PD and dementia. And caregivers need nerves of steel and the patience of Job to care for them, neither of which I have.

Its important to recognize our limitations in life, as my mother refused to do, thereby ruining several lives in the process. Its not worth it. Elders survive just fine in managed care and we get to be daughters again instead of bitter, resentful and exhausted caregivers who have no privacy. My mother was the best dressed woman in the place because of all the pretty outfits I brought her with matching costume jewelry. It all worked out for the best because she had "her girls" looking after her and I had my sanity.

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Reply to lealonnie1

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Amen to that, Lealonnie. Living with our mothers and being caregivers does not work. I couldn't make it work with mine and I'd been taking care of other people for years successfully.

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Yes, I think that you should now consider in facility care in the near future, likely in the new year. You will need to begin by getting her physically and mentally assessed and qualified to Medicaid in her state. You will need to gather assets as there will be forms and evaluations of her assets as well.

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Reply to AlvaDeer

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Caregiving only works when it works for all involved, and it sounds like it's really not working for you anymore, and that is ok. Not everyone is cutout to be a hands on caregiver. Plus you have physical limitations too, and you need to take care of yourself.
And your moms dementia will only get worse so best now to get her placed so she can adjust to her new surroundings and you can get back to just being her daughter and advocate and not her stressed out caregiver.
I wish you well as you now do what is best for all involved.

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Reply to funkygrandma59

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Your mom will adapt to being placed in assisted living. I couldn't have it any other way with my mom. She can have physical therapy provided also. PC offers activities and entertainment. It's extremely difficult caring for anyone with Dementia. Find a facility nearby and visit often.

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Reply to Onlychild2024

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You should look to getting her placed now. You'll get choices about the quality of facility she goes to if she's coming in as cash-paying resident. Many good care facilities let a person remain with them when they go on Medicaid if they made cash-pay for a certain amount of time (usually 1-2 years). If you wait until she's on Medicaid the choice and quality of facility will be limited.

If at all possible an AL that also has skilled nursing or memory care in a different part of the facility is a plus. This way when she needs nursing/memory care you won't have to find a different facility.

As for whether or not you're the right person to take care of her, of course you are. There are many ways of taking care of a person many of which don't involve physically doing for them. You want what's best for your mother and are determined to get it for her. Know what that's called? It's called taking care of a person.

Your frustration with her is understandable. Your anger and resentment at her constant neediness is understandable too. No one has an unlimited supply of patience. This is why you should take care of her by making sure she's being well taken care of. By being her advocate. Don't let your relationship with her be ruined because caregiving takes it from parent/child to master/care-slave. This happens all time in families and I hope doesn't happen to you.

I was a homecare worker for 25 years to elders with every kind of dementia and illness. Then I was one to my mother for a while until I brought in homecare. I came to a point where I just cannot be a hands-on caregiver to another person or put in one more hour of dementia care or eldersitting. My supply of patience was exhausted. That well ran dry a long time ago. Yet, I still have so many years of experience. So, I went into the business end of it. It's still part of caregiving, just not the parts I won't do anymore.

You don't have to be responsible for all of your mother's care needs yourself to be a caregiver to her.

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Reply to BurntCaregiver

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It’s hard to tell if this is just a pattern (sleepy during the day and more active at night—since it sounds like you have the caregiver during the daytime) or if she’s “saving herself” for when you are free.

Consider that a move to facility care could be good for both of you. You would get your life back and she would have all your loving attention during your visits. Even if you were able to completely, happily attend to her at home during your free time, there are still a lot of maintenance chores that are an unavoidable part of caregiving at home (cleaning, food prep, accidents, etc.) Saving the time spent on that might itself make a big difference.

And there is something to be said for making the move while she still has some cognition and money.

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Reply to iameli

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Fcoker23: Perhaps your mother requires managed care facility living.

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Reply to Llamalover47

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As you say "... wonder if I should start preparing for care outside the home" --- YES. I would start looking / visiting either facilities w memory care unit and/or nursing home (depending on what she can afford).

You have done exceptionally well caring for your mom.
There comes a time, with dementia especially, when a loved one will get the best care in a facility due to 24/7 staffing --- even with all the snags in a facility as it isn't really 24/7 care. You can also pay for add'l outside caregivers if you want your mom to have one-to-one attention in a facility.

You can be honest while realizing the goal in communicating with her is to keep her as calm as possible. So, there is NO ACTUAL LYING when communicating with a person inflicted with dementia. You tell them what will hopefully, possibly keep them feeling safe(r) and calm.
- and it is important to not over-explain. You say something once then change the subject.
- I often would say to a client 'that is a good idea, I'll think about it and get back to you.' Then change the subject.

Consider most important behaviors dealing with dementia:

1. Non-verbal communication:
--- voice tone
--- facial expressions / making eye contact), smiling
--- gentle touch

2. Re-directing: conversation.

3. Reflective listening (with dementia, you don't have to go into this much if at all - as they cannot comprehend) - although it is a good tool / skill to have.
* You repeat back to the person "I hear you saying xxx" -

I direct everyone to go to TEEPA SNOW's website ... take her webinars, watch her You Tubes, buy a book or two.

Is it possible to change your schedule a bit to have caregiver(s) there when your mom is more active / awake? I realize if you need to have reg '9 to 5' working hours, this might not be possible.

It is important to realize that even with a confused brain losing brain cells, the person inside FEELS everything ... and senses another's intentions and care. They know even if they can't verbalize how they feel.

It is a grieving time. These changes are hard. You are doing the best you can so give yourself a lot of credit. I am really glad that you make time for you and your husband ... this is so important. You need to maintain / keep as much of a personal life of your own as possible. You are doing that. I applaud you.

P.S. Keep all records separate; do not co-mingle your monies. Keep accurate records. You likely are doing this already.

Gena / Touch Matters

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Reply to TouchMatters

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i am the caregiver for my MIL. She knows she can trust me fully. Even though we have a good caregiver two days a week so I can go somewhere else to write, my MIL is never really happy about it. It was hard the first couple of months for me to leave because i know it caused her some stress about being safe. But I continued and she has learned to trust her…not like she trusts me, but it is ok. The caregiver understands. When I am around she does more and is more interactive for sure. I have a lot of patience having been a special education teacher. I have a great understanding for people who are unable to function or think like most others. You have to be willing to move with them, at their speed and in their world. It requires you to be understanding, kind, and sensitive to their needs and accepting of their way to do things. Your way is not always the best. Slowing down and moving to a slower beat gives you a different perspective on life.

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Reply to RetiredBrain

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This is a difficult decision to make for you, your mother and your family. While she's still of sound mind and can sign legal papers, make sure her paperwork is in order if this hasn't been done. She needs a will, a living will with her advance medical directives (Do Not Resucitate instructions, etc. as she wishes), and she needs to set up Powers of Attorney (POA) for medical and financial matters. Will you be her POAs? Also, to make things easier, if she has a credit card account, she can request a second card with your name on it so that you will be able to purchase things for her such as personal items, clothes, bed linens, etc. You probably have already set up her accounts so that the bills and statements are coming to your address. Offer to take over her financial matters if you aren't already doing so, so that you pay her bills. You also need to be on file with Social Security and Medicare to be able to speak on her behalf. This can be done with a phone call, with your mother sitting next to you to agree to this. Yes, do start thinking about how much you are capable of handling with your mother's care. Her health is likely to decline further as she ages. People with dementia have special needs that require skilled caregivers who know how to handle them. At some point, she may need 24/7 care, and a facility might provide better support for her at this stage. You will have to do the initial legwork to find a facility that seems appropriate for your mother. Look for a place near you, so that you can visit often and oversee her care. Try to find a place where the staff are skilled and friendly and the residents are friendly and seem to be people your mother would like. If she has dementia, she'll need a memory care facility. Later, if her health declines, she may need skilled nursing care. Some facilities do both. When you find a couple of places that are suitable, have a discussion with your mother about her need for caregivers and how much you are and are not capable of doing for her. If she is still capable of planning for her own future, talk about the benefits of being in a community where they can take care of her if she is not able to care for herself, and where there are skilled staff, residents her own age, where the staff arrange for activities, all meals, helping her bathe and dress, housekeeping and trips, and where there is a 24/7 nurse on staff. You can hire supplemental aides to take her to doctor appointments, if you cannot do it. This has to be a decision not only for her, but also for you and your family, so that your family can thrive. Understand that for your mother it is never easy to get old, have health issues, and become dependent on others. Assure her that you will be there for her, you love her, and will visit as often as you can. All the best to you and your family!

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