New & desperate in need of advice

river0fstars

Hi, I’m new here & after scrolling through some of the posts and comments here I’ve got to say I feel so much better to know I’m not alone!

I can relate to feeling resentful, frustrated, overwhelmed and all of the many (MANY) emotions that come along with caring for PWD.

My mom does not have an official diagnosis but many healthcare professionals suspect it & the signs/symptoms come and go (the aggression, the refusing to go to doctors or outside at all, the refusing to bathe, to the paranoia).

I am the youngest of 3. The oldest not only made the choice to be uninvolved but took legal action against our mother a year ago which as you could all imagine compounded the illness. My other sibling is somewhat involved, living ~1hr away from our parents & has a family (spouse & 3 kids) - so while I understand my sibling isn’t able to handle much of the hands on, I definitely have my moments where I lash out b/c I just need a break!

I’d love to hear more tips on how to balance caregiving while maintaining your own life & sense of self b/c this is a daily struggle for me. My friends are sick of hearing about what I’m dealing with mostly b/c they’ve never sat in caregiver role AND I feel like my social life is nonexistent. Caregiving is also partly to blame for losing my last 2 jobs 😭

towhee

Hello River, Welcome to the forum. Maintaining that balance is really hard. I reached out to the Alzheimers Helpline quite a few times and also joined an alzheimers support group to have someplace to vent. It is important to keep your friends even if to do so you have to not talk about your caregiving. Sometimes you have to admit you cannot do the physical caregiving and reach out for help, either aides in the home or a facility. Wish you a better balance.

SusanB-dil

Hi River - welcome to 'here' but sorry for the reason.

towhee is correct - you need a break. Please look into adult day-centers for at least a day or a few per week. So true that folks (friends and even family) who do not deal with 'this', do not understand. Can you have someone come in for a few hours during the week or weekend so you can get out? Go? Go do something different for yourself.

Also - do get paperwork in order. Do you have DPOA and HIPPA accesses? Important!

river0fstars

https://alzconnected.org/discussion/comment/182901#Comment_182901

Thanks SusanB-dil & towhee, appreciate the advice. We have certified aides 24/7 for mom & dad in the house, but mom not a fan of most & insists I should be present for some portion of every day 😭 as for any sort of adult daycare, mom is at stage she refuses to leave the house which is extremely stressful for me when need to take her out for any sort of medical appointment. My sister appointed herself the Healthcare Proxy & POA for both mom & dad b/c in her words she “is the decision maker” while I get to “execute” 😐 if you’re picking up on the undertone of contention you are not wrong. i truly feel like I’m stuck with no way out & nothing gets better 😭

M1

If your sister has appointed herself "the decider," then she also has the responsibility to execute. Maybe easier said than done, but don't let her manipulate you. What is stopping you from saying that you're done, you're getting a new job, you can't do hands-on caregiving any more? Her having a family is not an excuse. These may be questions you may want to go over with a therapist or counselor.

Emily 123

Hi River, Sorry you're here.

It's not easy to say 'no'.

Don't allow a person with dementia to drive the decision-making bus. The parent-child dynamic is hard to break. But having the disease means that your mom doesn't have the capacity to empathize or think logically about what her demands mean for you. Just because she wants you to clock in for filial duty every day doesn't mean that it's reasonable or necessary.

Your parents have the benefit of having caregivers 24/7. If there are things that the aides can do instead of you, then give them a list of those things. Stop going by your parent's home every day if it's exhausting you.

You won't get balance until you establish some boundaries. Sometimes it's easier if you talk that over with a counselor or therapist. Your time, friendships, and career are all valuable, and you have the right to carve out a space for yourself by saying 'No' to what you don't want to do.

river0fstars

https://alzconnected.org/discussion/comment/187817#Comment_187817

I keep having this argument with my sis & she continues to use her kids & job as excuse to not be available. I’ve even gotten so frustrated that I use her self elected decision maker status against her & she really doesn’t like that. It doesn’t matter how I approach her, she’s not going to budge. And if I step away it’s my folks who suffer.

housefinch

Your mom needs a basic evaluation and an official dementia diagnosis. Then your sister needs an education by someone on dementia and the realities of your mom’s and family’s future caregiving responsibilities. If your family has the money for 24/7 caregivers, then by all means this is the time to use it. Hire an aging care professional (geriatric care manager—often an RN) who can be your sister’s personal consultant for day programs, etc. The aging care professional can be the messenger instead of you. Your sister can then be put in her appropriate role. My mom hired a consultant like this. They have RNs, a social worker, an attorney—-lots of expert staff. Does my mom follow their recommendations or break out of her denial about our PWD’s limitations? That’s another conversation. Ultimately, your mom is already suffering anyway from being allowed to run a show for which she’s not equipped. Stepping out of your role won’t change things much. Put your oxygen mask on first. Just because your sister has kids or whoever doesn’t make your needs any less important. You might have to let go and accept a substandard situation—-I have had to, in order to protect my own health & sanity, with how my mom was (mis)handling things. Best wishes to you.

river0fstars

https://alzconnected.org/discussion/comment/187821#Comment_187821

Thanks @housefinch for your advice. unfortunately getting mom evaluated & diagnosed would involve taking her to see a neurologist outside the house which = anxiety for her & stress + anxiety for me 😐

we cannot afford 24/7 care out of pocket, we currently have certified home aides via Community Medicaid.

I think my sister understands the state of mom’s condition just fine. The issue is that my sis’ attitude is shove another pill down her throat or pay for yet another stranger to come in b/c she refuses to commit to pitching in on any sort of consistent basis, as sis put it “they lived their life”

I know my mom’s sense of reality is warped these days & that in her mind want = need & she’ll say whatever she thinks has to say to get me over to the house (she’s still capable of manipulating); but I’d hate to ignore her plea for me to come & for that to be the time it was real.

kekll25

https://alzconnected.org/discussion/66327/new-desperate-in-need-of-advice

I feel for you. Caregiving is extremely tough. I also have 2 siblings. One took total advantage of her after her Alzheimer’s diagnosis & actually stole $240,000 from her. I work from home & my Mom has been living with me for 2 years. I am completely overwhelmed. She wears depends but soaks through at night do I am doing laundry every day, I feel resentful that I am doing this in my own with no help from my siblings. I feel like I never leave my house. It’s affected my marriage & I feel horrible that I have missed college tours with my son. My husband goes with him. I feel like I have lost that mother daughter relationship & am now just an overwhelmed caregiver. I’ am in the process of finding someone to come im the morning to get her showered & dressed in the morning to give me a reprieve & someone who can stay with my Mom so I can actually get out with my husband. I feel like im eating anxiety medication like candy. Alzheimer’s is such a horrible disease

amynolla

Hi River…reading your experience almost made me cry because so much is the same with my situation. I am also the youngest child and my mom lives with me. Older siblings have alienated themselves from her due to issues from both sides. My mom denies there is anything wrong yet is paranoid, negative, confused about dates, has skipped payments on bills, does not shower regularly, refuses to leave the house almost all the time and will only see her PCP when she needs med refills. Everything is my fault according to her…for example, she couldn’t find her checkbook the other day and the only logical reason to her is because I hid it from her. She has wild mood swings and although I try to be patient, it takes a toll and sometimes I yell back at her when she’s yelling at me for some nonsense. This happened last night which is why I’ve been reading so many experiences! Just want to let you know you are not alone!