New, 1st Post & Exhausted

TraciW153

 I'm exhausted dealing with my Mom. A year ago I moved her to the house at end of driveway. 

She seems to be changing fast, at least to me. Saw Neuro & she has normal pressure hydrocephalus. Did not pass 5 min memory test but did ok. Will now have 4 hour memory test then back to dr. 

I don't know what that test shows. I'm trying to learn what I can. 

Suddenly she needs or wants me constantly. I'm exhausted & trying to recover from spinal surgery. I love her & will do anything. 

She used to do things with others and she's made friends at church but she only wants to do stuff with me. 

So exhausted 

May flowers

Traci, welcome to the board, but sorry for the reason you’re here. You will find a lot of support here. It’s obvious how much you love your mom and what a caring daughter you are.

I understand the exhaustion especially with a LO that is needy. My sister and I were caregivers for my mom who had ALS, and my son was 3 at the time.  She also had friends but she withdrew from everyone, just wanted family. She also felt so claustrophobic from the disease, she wanted someone next to her all day to move this hand, move that foot, she wanted moved every 5 minutes. I get it, but it was hard to maintain. 

I can’t even imagine doing what you’re doing after surgery. I hope that you are able to get some respite. Maybe some of her friends from church can visit and give you breaks from time to time. Do you have any siblings who could help share the load? Is a part time caregiver a possibility? 

TraciW153

Thanks. I have a brother in another country and I'm only family member in the state. I'm it.

Thanks again for answering. 

ButterflyWings

Traci - I hope you can locate some help part time, maybe your insurance would cover a few weeks of support for your own post-surgery rehab? Another pair of hands or feet even to do a few things at home for a short while - could help you both.

She also may be eligible for some free services that your Area on Aging can help identify. It is tough to try to handle solo (won't work without taking both the caregiver and their PWD LO down.)

It sounds like she may be shadowing you, which I think about that almost like a child's separation anxiety from the parent they depend on. It kind of makes sense as their world shrinks and starts to become more and more confusing and I would assume scary. My DH is very independent minded, even in stage 6d - he will still walk off at the drop of a hat if not watched like a hawk. But when I get up from sitting together, say to the bathroom, etc., he is quick to ask if I'm leaving him or how long I will be gone. It pulls at the heartstrings to realize the insecurity underlying that, which means fear. 

I so wish we could just disappear dementia tomorrow for everyone. Banish it from the world. Such a terrible disease. Please take care of yourself as best you can. Very important. "Put on your own oxygen mask first". Or there will be no caregiver to help her.

Wishing you the best under these challenging circumstances.

MN Chickadee

It's common for a person with dementia (PWD) to lose interest in previous hobbies and activities. The dementia affects their executive function and ability to start things. She may not keep up well with the church ladies anymore and finds the interactions tiring.  

The typical and early challenges with NPH are mobility issues and incontinence. These will of course make you even more exhausted. Even for people without back surgery incontinence is often what is the breaking point. Given your own injuries you will want to look at whether you will be able to physically care for her. It will involve  heavy lifting. If you haven't done so yet, consult an elder law attorney for financial planning for her care. Everything varies by state so you want advice in your state. Sometimes Medicaid covers some in home help. Sometimes memory care or skilled nursing in a facility. You will need someone hired help if you don't have family members to pitch in. You have already seen how tiring this is, and doing it without respite is nearly impossible. It's common for caregivers to die before their PWD because their own mental and physical health gets over shadowed and ignored in the face of the massive and more obvious care needs of the PWD. So it's really important to make a plan for some help to protect yourself and your health. And  be on wait lists at long term care facilities in case you need it. It only takes one fall, one broken bone, one accident to completely change the trajectory of her life so having a plan B and C are important. Are there financial resources in your family to hire a companion to hang out with her, play games, take her on outings etc? It may take her some time to warm up to the person but eventually she would and would give you some time away knowing she is socializing and being active. Adult Day Care is also a great resource if there is one in your area. They can usually handle care needs like incontinence. It tends to be cheaper than in home care and keeps the PWD doing activities geared for their cognitive level and keeps them active. 

Cyndisaunt

Remember that even though she wants you with her all the time, she does not need you with her all the time. As long as you are both safe, take the time to you need for even small breaks. 

This, I learned, and wished someone had been there to remind me as I fell back into sitting with her every moment for 8 - 12 hours with no break. When I did leave her for an hour or so she was as she was before I left her. 

Not saying that this did not take some planning and arranging a space where she could be independent. I setup cameras, for instance so I could see what is going on and watch the playback if there was something off when I returned. 

These breaks made all the difference after 4 years as a primary caregiver for my LO. 

I wish you and yours all the best and please keep reaching out as you have questions or just want to share how you are doing. 

Cyndi