New Parents

I feel for you and so sorry that we all find ourselves at this place. We just inherited my FIL part-time after the death of his wife in April. Due to jobs we take care of him in his house from Friday afternoons until late afternoon Sundays and then if the primary caregiver has to do anything we will take the days off and take care of him then as well.

The amount of work it takes to keep up with him and keep him safe is overwhelming somedays, fortunately my husband and I tag team so it isn't just one of us taking care of him. There is so much to consider when it comes to caregiving for a PWD, while they are like a child, there are so many other things that they can do that a child wouldn't think about doing. My thoughts as with you.

It’s a difficult adjustment to make for everyone. More exposure makes it clear how extensive the losses are. She won’t have her routine to keep her on track, and the disease will make it so that she can’t recall where things are in your home, or even why she’s there. She won’t have much sense of time passing-you have to have a working memory to do that. My mom spent 9 months with me, and she usually thought she was visiting for a weekend. I just ran with that.
She’ll have limited ability to remember even fairly recent conversations or and can get confused with trying to do more than one or two steps of a task, like taking pills. Just assume if it’s not sitting directly in front of her that she won’t have a cue for a task. Even that assumption might be wrong—things can be in front of them but overlooked because they forget that they were going to do something with them, or they can’t recall how to get started. A PWD that used to post here said that even initiating simple tasks was like having a pack of cards laid out in front of them and they didn’t know which ones to pick in order to get things done. A lot of her day will feel to her like she’s always wrong.
This is a good video

It's a jump to adjust. Don't get too focused on keeping her busy or entertained. By its nature the disease diminishes your loved one's capacity to feel happy and engaged. That doesn't correlate to how much you care or how hard you're trying.

Your mom'll be using a lot of bandwidth just to keep up with processing her thoughts throughout the day and she'll need some downtime. Keep in mind too that she won't remember anything she's done recently, so may complain to you of being bored even though you're bending over backwards to find things she can do. That's the disease—She honestly thinks she's been sitting around doing nothing because she can't recall her day. Try not to let that get too frustrating or let it make you feel like you need to do more. The tasks my mom did best with were short and had a definite end (Sorting clean laundry, labeling a stack of family photos, cleaning some silver). She had an ipad from about 10 years prior to us intervening and she played solitaire on it from day 1 until late in her progression. Are there any kind of rote games or TV shows your mom might like?

Another source of frustration is driven by a mismatch between what the person thinks they can still do and the reality. The person may talk a good game about activities and you might work to set something up for them, but when push comes to shove they'll often find a reason not to do it, or won't really participate, because it's become too challenging. For my mom that was water aerobics, which she loved—every day she'd talk about joining a class, every day I'd try to get her to go to the pool, she'd talk about it all day, then when it came time to put on a suit she would get really quiet and then balk ("I think I have a UTI" "Tomorrow"). Eventually I'd just talk to her like she was actually going every day and that seemed to make her happy, which was more of a win than trying to coax her into her bathing suit. You get used to fibbing a lot.

That to me is one of the toughest personal losses for family of PWD, especially the life partners and children. Our LOs just don't have capacity to care for us the way we need them to care.

I hear you. My mom went through breast cancer 25+ years ago. When I got the same diagnosis last year, I didn't even tell her. It was easier than facing her apathy over something that big in my life 😞.

Reading your post and the responses brings up so many feelings, @JulietteBee. Sending supportive thoughts your way as you embark on this journey of love and caring. There will be peaks and many valleys in the honourable path you've chosen. One of the hardest things is the lack of empathy and inability for PWDs to see outside their own needs as the disease progresses. The loss of a LOs deep empathy toward others is another casualty of this terrible disease.

Glad to know you plan on balancing as it's so important to perform self care. I failed miserably at that aspect. And am now feeling the effects after 10+ years of primary caregiving. Five weeks ago, my 92 year mom moved to LTC. The "terrible two" stage described is over, yet the challenges remain addressing the rapid decline that led up to her recent transition.

Wishing you strength for the journey. Take care.

your posts resonate so much with our current situation with my FIL and we are not even the primary caregivers. I have seen and heard my FIL say and do things that I would have never dreamed possible. This disease truly is the worst.

One thing I've heard is that the Red Cross can build ramps for disabled people so they don't have to go up stairs to their house. They built a railing for my dad after one of his friends fell on his front steps.

Hi @Grenah, your experience, like so many, is heartbreaking. My mother also lost all interest in the things she used to enjoy. That includes participating in any community or enrichment programs. I was her sole, 24/7, live-in caregiver for 14 years of this horrible diseases progression, and can empathize fully with your journey. Sometimes, I feel I am her sole source of entertainment. I am not funny, so no pressure!

My mom lost the ability to walk and use her hands in March after a short hospitalization. And no one can explain why. Caregiving-wise, it was like falling off a cliff. Up until then, she could at least use her walker, which meant she had a little independence. Meeting her needs at home became impossible due to the heavy lifting as she became bedridden. She constantly wanted to get out of bed, risking another fall, and I wasn't able to lift her. She needed two PSWs to move her. She transitioned to an LTC in April, which addressed that issue, but created a slew of new challenges. I spend most days with her, which involves a lot of driving. The mental caregiving is still 24/7 as its hard to relax and shut one's mind down after such intensive caregiving. People say give it time, but I don't know….right now, I am in a the tunnel.

Appreciate everyone's listening and understanding.
Best strength for the journey.