Help with Everything??

ZarkinFrood

Hi all,

I don’t really know where to start with this post - I have so many questions and struggles. I (24) am currently the full time caregiver for my mother (57) who has early onset Alzheimer’s/dementia. I am also a stay at home mom to my son (2) and have been having such a hard time with feeling burnt out/emotionally overwhelmed. 

My mother has always been extremely intelligent, with multiple degrees, an active member of MENSA, etc. I had just moved out of the house after high school when she began to show symptoms of the disease, and even though we’d talk regularly over the phone, I didn’t notice anything was wrong apart from the occasional misuse of a word or her forgetting what something was called. Her boyfriend who she was living with didn’t contact me or my siblings about just how bad her memory had gotten, and I only found out when I visited home almost a year later.

Now, 3 years later, she’s gotten multiple diagnoses, is on several medications, and has been living with me, my husband, and our son for 9 months. I am now having to learn how to be a parent and a caregiver to my own parent at the same time and am so overwhelmed. She is having a tough time feeling fulfilled in her days - I’ve tried writing down a list of activities she can do herself, but that hasn’t seemed to help. She will regularly burst into tears saying she “doesn’t know what to do” with herself, and I’m running out of different ways to suggest things for her. She also has begun taking and hoarding random things throughout our house - sugar packets, ziplock bags, tissues/napkins, hair she picks off the dog, even my sons toys will end up in her dresser drawers or stashed in her closet. 

I know this post has become a bit of a rambling mess, but I’m so lost on what to do, how to help keep her happy, keep my own sanity, and still have enough energy to be present with the rest of my family. Any advice or tips would be greatly appreciated!

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Ed1937

Zarkin, welcome to the forum. You are way too young to handle everything that is to come. Sorry you are dealing with this now. Victoria gave you some excellent advice. Somebody needs to have durable power of attorney for your mother. A CELA (certified elder law attorney) would be a great thing for you to see. 

Following is an excellent link for you to follow. It will give you a lot of information on the disease, and it will help when things change. https://www.alzconnected.org/uploadedFiles/understanding-the-dementia-experience.pdf  

Vitruvius

While you are working towards long term solutions to your situation, you may look into adult day programs which would benefit both you and your mother. 

Many areas have day programs specifically for adults with dementia. These programs have activities and social opportunities geared specifically for PWD. My wife goes to such a program and it helps overcomes her feeling of not knowing what to do.  It did take a while for her to adapt to it but now she looks forward to it. My wife is also on the younger side and you will probably find most participants are noticeably older. However that doesn't really matter as it's more about what stage they are in than their age. I just told my wife it was a social club for retired people.

You may think your mother is not far enough along for such a program, but many caregivers underestimate how compromised their LO actually is. 

MN Chickadee

You've received excellent advice. I would second seeing an elder law attorney asap.  This will save you so much time and money down the road to have all legal/POA/estate & financial planning done. You will come out of it with a sense of if she has enough funds for care, if Medicaid is needed, whether you can be paid for your care of rent out of her funds, and more. If she doesn't have much for funds they can help plan for applying for Medicaid. Those services can range from some in home help to long term care facility. All this stuffvary by state and the advice of a good elder law attorney is invaluable.  And a second for adult daycare. It can be a life saver when things are getting crazy at home. Giving the PWD that routine of going to a familiar place each day gives their days structure, and can be a great way for them to keep busy while giving caregivers a break. Most are well trained in dementia and find activities to meet the person's needs and skill level. My mother resisted at first but we called it volunteering at the "center" and just kept bringing her. Eventually she settled in and thrived there. 

My mother did the hoarding thing you describe. We still haven't found the can opener she ran off with 5 years ago. For some reason kleenex and silverware were always her favorite to squirrel away. We had to baby proof much of the kitchen and fridge because it was hard to cook when we couldn't find anything, and she was ruining food. This phase is extremely taxing when they are constantly finding trouble. I honestly can't picture doing it full time with a toddler as well. I feel for you. 

I would tour memory care facilities and get on the wait list at a couple NOW. Dementia can take twists and turns, and many people find themselves in crisis mode when they didn't expect it. If her needs change you need a plan B and plan C. Your child needs to come first, period. 

quartlow2

My heart goes out to you! I also 2nd the advice of seeing a lawyer, adult daycare and touring MC facilities. It is common for the health of caregivers to give out before the PWD does. Take care!

Livvie

Yes, get legal advice now! Thank goodness my dad was smart about preparing his finances so that it would be easier, but the process of getting into a nursing home when the time comes is a nightmare! It is awful trying to navigate this while dealing with him being in crisis. I had no idea what I would have to go through and you will not be sorry for having done the hard work ahead of time.