lost

Patyh75

Hi I am new to ALZCONNECTED im not sure where to start. my mom has been diagnose with AlZ. she currently lives with my dad, but my dad is having a really difficult time accepting her diagnosis. he is not willing to educate himself about the disease and has no patience for my mom. he keeps saying he can't go through with taking care of my mom. he has mentioned that it is my siblings and my responsibility to care for her. I have been doing my research and reading almost every day about the disease but it's getting so overwhelming, and I feel so lost. my siblings and I all have family and can't take the responsibility of taking care of my mom full time. My mom is in the middle stages. I want to help my father with giving information on how he can help my mom but he just says he does not want to think about it.

M1

Hi Paty and welcome. Your dad is sending a clear signal that he can't handle this. Is he perhaps having cognitive charges of his own? that may be something to consider.

If finances allow, it may be a kindness to your mom to make other living arrangements for her so that she is not subjected to abusive behavior by your dad. It sounds like you and your sibs need to meet with a certified elder law attorney so that one of you has durable power of attorney for your mother's care (as well as your dad's, eventually) and finances, and you may want to start investigating assisted living or memory care facilities. Unfortunately, you cannot force him to be a dementia caregiver if he doesn't have the capacity to do it.

Anonymousjpl123

Hi Paty I’m so sorry about your mom. I think you have found a great resource here, and there is also a hotline you can call at any time to talk with someone who has expertise in Alzheimer’s.

M1 is right - the best thing you can do for your mom is be sure you and your siblings can help, if possible. Figuring out finances is one thing. Another is whether either of your parents go to the doctor regularly. Mine had not. It was a process finding my mom a primary care doctor let alone eventually someone specializing in Alzheimer’s.

The best thing you can do, along with trying to get them to the doctors, and begin the process of exploring what services are available. You are doing the right thing by learning about the disease. It is hard, but there are lots of resources.

Smilescountry

Paty,

You are right. This is really hard. You mention that you have family to take care of. A good while back, my husband and I had responsibility for his parents while we were raising three very active teens. My husband's sister had died several years earlier, so we were it as far as immediate family was concerned. My mother-in-law was terminally ill with cancer, and my father-in-law was in the later stages of Parkinson's disease, complete with dementia. They tried their best to take care of each other, but it just couldn't be done. Someone directed us to a semi-retired elder lawyer who was wonderful. We didn't have much money, so he mapped out a strategy for getting finances in order and arranging care, and he had us do the footwork to keep the cost down. That gentleman was an angel! My father-in-law had to go to the nursing home, and we brought my mother-in-law to live with us for about a month until she passed away. There were church friends and extended family who helped us, and our children also wanted to help as much as they could. My husband took family leave for a short time to take care of his mother. But Alzheimer's is different. Fast forward to the present. Both of my parents have dementia. A year and a half ago, they were living on their own, driving their car, and being fairly independent. However, something wasn't right, and we discovered late in 2022 that my Dad was already into Alzheimer's, edging into the middle stages. Mom tried to take care of him, but Alzheimer's seems to change constantly, and she was at a stage of mild cognitive impairment that made it difficult for her to adapt to those changes. She could not do all the things necessary to keep Dad safe, and she was so worn out that her own cognitive abilities were being affected even more. Dad was sundowning, and after we would all leave for the day, he would wake Mom up, insisting that he heard and saw people who weren't there. That is hard, and if a spouse says that he cannot take care of his wife I would believe him. Begin with a good lawyer experienced in dealing with the elderly. Find out what your insurance will cover. One thing that we lacked at first was a social worker to help us walk through this, but now my parents' insurance provides that kind of help. Research your options--caring at home, assisted living, memory care, etc. The longer that you wait if you need long-term care, the fewer your options. Some very good places in our state won't take new residents if their dementia is too advanced. On the other hand, those same facilities will keep current residents, even if they get into very advanced stages, as long as they are not a danger to themselves or others. Of course, finances are also a factor. My parents actually saved money for the very situation that they found themselves in, and they both decided to move together to a smaller assisted living facility in their own community. They know several of the residents and have connections with many of the workers. They get excellent care, but because it isn't a nursing home or an official memory care facility (even though it does a lot of memory care), we provide extra support from time to time. Dad has advanced quickly and has broken his neck twice. However, it is a good balance for us because we can be actively involved in our parents' care while not having to be there 24/7. And it is the only place where our parents could be without being separated into different wings or buildings. That angel of a lawyer once asked us, "How do you eat an elephant?" The answer, "One bite at a time." It has taken me over a year to get everything to a place that feels as comfortable as possible for me. I get advice, make lists, prioritize, and make some time for myself, my husband, and my kids and grandkids. Some of the lists took months to complete, but it certainly felt good once I got it all accomplished. Again, this is really difficult, but there are resources to help you do what is best for you and your family. Let us know how it goes.

VKB

https://alzconnected.org/discussion/68622/lost

https://alzconnected.org/discussion/comment/202960#Comment_202960

I get the feeling your father has already decided he wants no part of this problem even now. I'm sure all of you are hoping your mother can stay safely there with your father at least for now. However, taking care of a person who is descending into Alzheimer's /dementia takes extreme patience and at least a basic understanding that it is not the fault of the person when they repeat themselves and can't remember things. Hopefully, you and your family are already making some wise, safe plans for your mother. Home care with some paid help is best, but sometimes this is impossible. Some facilities are better than others, and if that is the decision, you all must visit often to make sure your mother is getting excellent care. It is a hard, long road ahead, but none of you will regret making sure your mother is well cared for.

harshedbuzz

@Patyh75

I am so sorry for the situation in which you find yourself. I wonder if your dad is having some sort of cognitive changes himself. While many spouses would love some free hands-on care from their adult children, I have never heard of a parent wishing to burden his children with all of the care of the spouse.

I have to completely disagree with @VKB's "at home is best" sentiment. That's nonsense in a situation where your mom is being neglected and potentially abused at home. And a little insulting to those of us who were forced by circumstances to place our LOs. If you and your sibs cannot take on the custodial care of mom, I would see a CELA about having one of you assume POA or guardianship and placing her in a quality MCF.

HB

housefinch

Agree with @harshedbuzz that each family must choose the best care option for their situation. There is no “best”—-only what is the best option for your unique situation.

psg712

I respect VKB's desire to keep a loved one at home, but I cannot say it is "best" for every PWD and family. Although we have the dementia caregiving experience in common, no two situations are exactly alike. The PWD is not the only person with needs to consider, and even if family agrees on keeping her home, sometimes it is not healthy or safe. Carefully-researched placement, with ongoing involvement and support by the family, can be as much an act of love as home caregiving.

VKB

Psg712

https://alzconnected.org/discussion/comment/203158#Comment_203158

Yes, I agree. Whatever is best for all concerned is the way to go. Caregiving at home with family or paid help is not always an option for some for many reasons.

Patyh75

Thank you all for your input. I really appreciate all the advice and comments. But can someone tell me what is this lawyer thing? Is it someone that specializes in dementia patients? How do I find a social worker that can help ? Through her doctor? Thank you

M1

Certified elder law attorneys are experts in handling legal paperwork for older clients with disabilities. Look by location at nelf.org. they can handle wills, powers of attorney for healthcare and finances, and financial planning advice to handle assets correctly should you need to qualify your mother for Medicaid in order to finance long-term care. Worth it. You may want to call more than one, and many offer a free initial consultation.

Patyh75

https://alzconnected.org/discussion/comment/203298#Comment_203298

Thank you . All this information is helpful.

Smilescountry

https://alzconnected.org/discussion/comment/203290#Comment_203290

Getting the lawyer would be my first step. Talking to the family doctor would be second. Every area in the U.S. should have a federal council on aging that can provide resources for coordinated care (They go by different names, unfortunately.). That would be a good resource to ask about someone to help you manage a plan for care. Some insurance companies also provide services now. Some communities have an organization that coordinates all kinds of services, and your doctor's office might be aware of that if you aren't. Once a person is admitted to a hospital, social service people step in. They are also freely available with hospice care. And, of course, talking to someone on the Alzheimer's Association hotline is very helpful.

Patyh75

https://alzconnected.org/discussion/comment/203435#Comment_203435

https://alzconnected.org/discussion/comment/203435#Comment_203435

Thank you