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Be patient with yourself. This is not an easy situation to be in.
Ask for help with local Alzheimer's Association.
Gena / Touch Matters
Take one day at a time.
Appreciate and celebrate your successes and don’t beat yourself up when there is a setback. There are lots of setbacks.
You can’t “win” so humbly accept your place as a gracious good sport.
Take plenty of breaks where you can. Plan ahead so your breaks can be somewhat meaningful (not just “wasted” time spent wondering what to do).
Appreciate your loved one. Every day.
Allow yourself to find humor in the funny things. Allow yourself the grace to cry on the hard days.
Someday you will look back on this time as a special time.
And one more thing that's important....don't feel that you're in charge, and that everything that's done has to be done your way. This may seem like a good way to organize everything but you will feel better if you let your husband do what he wants, and you help him as best you can. This is healthy, a way of giving him control as much as possible. Also, If he gets angry at anything, back off, and let a few minutes pass before continuing. This will help you regain control of your emotions and help him get over the feeling of losing control of his feelings.
Hope you're getting help from others too....at least talk to others about what you're doing.
The other important learning lesson is that while I'm learning about his illness and probable outcome, I should be making my end-of-life plans too. I don't want to burden my loved ones with being dependent and maybe even hostile. I needed to get going with an attorney or two and figuring out how to go out, "My Way."
I recently researched the - What is the origin of that part of our vows that say "in sickness and in health" and found that though there is a lot written on that subject there is no indication of who wrote it. It's a very clever line. Sounds romantic during the ceremony but it doesn't give the education that only being neck deep in the sh*t can give you. It doesn't tell you either about the enormity of the job or about anything near the many, many details regarding the supportive acts that you will be preforming, or about how you better start saving you butt off, of buy into LTC insurance at an early age, or that you better learn a hobby or musical instrument to help keep you company during hours and years of isolation, and maybe at the same time caring for children and parents.
To boot, if you were raised by cold disconnected parents, or you were an independent personality who may have been one to walk away as a good but lone wolf kind of being, then the early human kindness lessons very needed at times such as these will be something you'll have to learn on your own. It is possible. It will be rough, you will be exhausted but you will become someone you will like and be in awe of better than the person who you are now. It can be learned.
You Must join a support group. Mine meets on line. They not only meet they give lessons on how to do exactly what you're asking about. How to care better. How to find therapists for yourself. How to manage finances, etc, etc, etc, free.
I get no benefit from saying that I love mine. Years ago I hated joining anything. I'm not a joiner, but I was loosing my mind and attended two others before the Insight Memory Care Ctr (IMCC). Their office is in Fairfax VA. They just opened another in Sterling VA.
The current group I attend (Insight Memory Care Center) has different levels of groups that meet online. Those that are new to this journey have their own group. I belong to the group that has been caregivers for 4, 15 and 20 years. There are a couple of newbies that prefer starting with us and it's perfectly okay. An acquantance of mine preferred the beginner's group because she was disappointed that (my interpretation) my group talked to each other as friends (on the subject of dementia, 97% of the time) and didn't keep trying to cure the disease by offering to each other different potions and exercises. We've already been through all those attempts. We sympathize and understand but it's like trying to poke a hole in water. Hope seems like the last thing to go.
My group rather discuss the latest decline experienced with their LOs, and ask for tips on how to, say, manage scenes in the bathroom because of the perhaps fear of water (mostly), or getting undressed, or letting go of something that was the almost part of the patient namely dirty clothes. Or which are the best diapers or home aid agency. They share names of male aids if that is needed over females aids. We talk about movies. Country wide their are adult DAY CARE services but IMCC is the only adult Memory Care day care center. Our zoom group has attendees from Massachusetts, and Connecticut and yet it's HQ is in VA.
Whatever need to learn you will find it online. Talk to a geriatric care manager. Speak to a social worker at a hospital. Each time you hit a wall say to that person - I understand you may not be able to help me but can you advise me where to go. You can contact IMCC just for information. There are kind people in this culture all over the place.
Aging Care is also a super resource. I value it too, very much. It has been very helpful in many ways especially in the middle of the night when I'm alone, & I even simple need to connect to my "family" of caregivers.
I find there is a point in time where an event causes the death of the relationship that was and creates a new relationship of need and caregiving. (It may include unsupported grieving that doesn’t feel legitimate because the person is still breathing.) Even in the best circumstances when there is love and gratitude, the new relationship is against an uneven backdrop of taker and giver.
Is this stranger you’re caring for giving you emotional support? Or was it your spouse who did?
Are you battling with yourself because there are glimpses of the spouse you
love that the stranger hasn’t completely obliterated? Are you grieving and experiencing the emotional numbness that comes with it while stuck in an Alzheimer’s limbo where you never know which minute you’ll be with your spouse or the uncaring Alzheimer enemy? And maybe, blaming them both for the chaos? And then feeling guilty? Which leads to numbness and the label “emotionally lacking”?
Sadly, in a country with such vast resources and presumed good will, your options will be based on cost as much as anything else. They shouldn’t be based on false negative self-worth.
Alzheimer’s assaulted your life and is trying to destroy your self-worth. Don’t let it.
You may want emotional buckets: the spouse that was gets your love, the spouse who is MIA gets help and the Alzheimer’s enemy gets your anger. And there’s an overlooked but critical 4th bucket that deserves time, energy and emotional nurturing for healthy happy living: You.
Learn to ask for help.
More importantly learn to accept help.
Know when you can not do any more. And when you reach that point ask yourself "Is this enough" or do you need to either hire help or place him in a MC facility that has staff 24/7.
(I told myself that I would keep my Husband at home as long as it was SAFE. Safe for HIM for me to care for him and safe for ME to care for him at home.)
Look for as many resources that you can find that will help.
Area Agency on Aging, are there services that you or he may qualify for?
Alzheimer's Association, They have a 24/7 number for any question you have.
Adult Day Care, are there any in your area?
Is he a Veteran? If so the VA might be of help depending on service it might be a little help or a LOT!
Would he qualify for Hospice? If so you will get all the equipment and supplies you will need along with an amazing amount of support.
Get any outside help you are able to get and do not berate yourself for not being a "natural" care giver. Frusttation, exasperation, and exhaustion are part of the package. A live or virtual Care Giver Support Group would be a place to share your story and hear how others may be dealing with similar emotions.
I found a beautiful nearby residence for my mother and another LO, by listening to His guidance to find another way to care for them in a Faith based setting near my home.
By His Grace, they received (and are receiving) wonderful care, they know that I love them and honor them, and I too am able to enjoy a rewarding life with the rest of my family.
Our God does not ever ask of us more than we are able to do. Hope you are letting Him speak to you in many ways.
You can hire some outside help to assist you, take him to an adult daycare center up to 5 days a week, or have him placed in the appropriate facility where he will receive the 24/7 care he needs and you can just get back to being his wife.
Only you can decide what is best for not only him but for you as well.
And if I can add one more thing. getting educated in the disease of dementia, is very helpful as well, as it will better equip you with the tools needed for what can be a very long journey. Teepa Snow has many great videos on YouTube you can watch along with several great books as well. And the book The 36 Hour day is very helpful as well.
I wish you the very best going forward.
This article lists a lot of resources. I also hope you'll get as much help as you can, through respite visits and other family members, professional caregivers, etc.