Unless you have been through it, people don’t “get” it. I read other people’s stories that seem so terrible compared with my own and think “the ghost of Christmas coming”. Nobody understands how truly difficult this so-called early stage of Alzheimer’s can be. It’s not just misplacing their things, it’s misplacing yours in strange places. It’s the inability to follow simple directions, the inability to read with comprehension. It’s a losing battle trying to keep our loved one truly present, to have a conversation of any substance. Diagnosis: “I now pronounce you dying by inches”. It makes your heart ache and it is hard to avoid depression.
~ Companionable silence as you take in a view or work together on a simple chore.
~ Finding peace in knowing you're preserving your LO's dignity as best you can and that they feel safe because you've got their back.
~ Forgiving yourself for those moments of lost patience or if something gets by you.
~ Journaling to let out those pent-up feelings.
~ Not severing your circle of friends. Keep in touch, let those disposed to help help.
~ Educating yourself on the condition so you're not blindsided by new developments.
~ Tap into current awareness of new medications or therapies that have helped others and could help the two of you.
~ Lean into your belief system for comfort and hope.
Some of the points above were takeaways from an article, Preserving the Patient's Dignity, one of four Awake! magazine articles from way back in 1998. Thankfully there're more resources to hand now than then; but the practical counsel cited in that article from Alzheimer's specialists and the Scriptures still holds. Here's a shortened url if you'd care to read it: www.bit.ly/3Sbwt5e.
When we went down this road with my Dad, I remember thinking I'd already started grieving long before he died. In hindsight, I wish there were things I'd done better. But I instead of wallowing in guilt, I can help others on their journey.
Wishing you peace of mind and all the very best support.
The difficult thing is to accept that there will be some really tough times ahead, but there will also be good moments.
Accept the declines as best you can.
Rejoice with the things that can still be done,
Mourn the loss when a decline takes another bit away.
Do what you both can do now.
2 difficult things to caregiving are:
1. Learning to ask for help
2. Learning to accept help.
You can not "do it all" yourself.
What is your "line in the sand"?
My deciding factor was SAFETY.
If it would not be safe for my Husband for me to care for him at home I would have had to place him.
If it would not be safe for me to care for him I would have had to place him.
Safety to me is not just physical safety but Mental and emotional.
If you reach a point where you can not continue to care for him and you have to place him in Memory Care it is NOT a "failure" it is acknowledging that his care is more than you can handle and that he needs Memory Care. Making this decision is not an easy one so if you come to this conclusion know you have done so after great thought.
I do hope YOUR doctor is aware of the situation. Caring for someone takes a toll on your health and your doctor needs to be aware. If you need to talk to a therapist do so. It can help.
While this forum is great if there is an in person Support Group near you take advantage of it.
If your area has an Adult Day Program get your husband involved.
If your husband is a Veteran contact the Veterans Assistance Commission and see if he qualifies for any services. It might be a little or it could be a LOT.
If your husband would qualify for Hospice get them involved as soon as possible. They will provide all the supplies you need, all the equipment that you need as well as a great team of people that will support both of you. (My Husband was on Hospice for almost 3 years, I could not have done it without Hospice and the VA)