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JBINAUSTIN's Photo JBINAUSTIN SparkPoints: (54,270)
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1/17/16 7:56 P

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I'm so sorry to hear that. My husband had a massive stroke 5 years ago and I too miss the company of my original dude. His challenges are mostly cognitive, but they keep him from dealing with his minor physical weaknesses.

You might not want any advice now, until you get a chance to live with it for a while. I know what I wanted most right after my husband's stroke was people to hug me and tell me we'd make it thru this. What I needed was hugs AND people to make sure I ate, rested, and exercised. I wasn't as open to advice when I started being a caregiver as I am now. I wish I had been able to prepare for things, but I wasn't. That's OK--I do what I can, when I can. If you don't feel like advice right now, maybe file this away for future reading.

When my husband had his stroke, I was overwhelmed and just dealt with stuff as it came up, and it came up FAST. But it was hard enough for me to deal with what was, without having to think ahead to what will be. You possibly have an "advantage" (not the best word for it) because your husband's difficulties will come on slowly, so you see them coming and try to prepare in advance for the harder parts. Caregiving is a very hard road, whether it hits you all at once or it stalks you relentlessly.

This would be a good time to get some emotional support to deal with the losses, both current and future. You'll want to find someone who can listen without judging because you will inevitably (unless you are already an angel) have thoughts that will scare and shame you. It's OK to have these thoughts, although they may seem horrible to you when they happen. Your sons might also benefit from some outside emotional help now, because they face both the certainty of losing their father and the uncertainty of their own risk.

I went to an Alzheimer's caregiver support group for a while, because the effects on my husband's cognitive function were similar to those of early Alzheimer's. You may have to shop around for a group that works for your situation. Some stroke support groups have mostly folks with physical problems, which didn't help me enough because hubby's problems were mainly cognitive. I had trouble finding in-person caregiver support groups in my city; it was just too stressful for me to battle my way across town thru rush hour traffic to attend. But I found great help in a support group in Facebook as well as this one on SparkPeople.

My husband has impulse control ("regulation") issues from his stroke. He'll make comments about how I do stuff (he's an awful passenger, now that he can't drive) and doesn't think logically about consequences or how to do things. It sounds like your husband is starting to experience that. You have to internalize the message that it's not him behaving badly, it's his disease. This is hard to do when your loved one is yelling at you or criticizing you, but it does help to work on that. You didn't say how old your sons are, but children are particularly sensitive to the judgments of their parents. They need to internalize this message too, and I suspect it will be harder for them.

Although your husband's physical impairment is small now, it will grow. This is a good time to have some serious discussions with him about how he wants to be cared for when it gets hard and personal. It's important for you both to know whether he really wants to be cared for at home at any cost (and there will be financial, emotional, and physical costs) or whether he wants to be in a supported living arrangement. It might seem like he'd get more attention from his family at home, but that can be so draining for the caregivers that you might not have much left for emotional support. Some people really want to be in a skilled nursing facility, so that they see their family and friends when they feel up to it without burdening them 24/7. It's also important to discuss what you are capable of. Some people are nurturing physical caregivers. Others are not. It's OK to be either type.

Your husband also has to process what will happen to him, and his desires might change as time goes on. For example, he might be ignorant of or in denial about the results of future physical impairments. My husband and I knew that his heart condition put him at an increased risk of stroke, but I had no idea that our current situation was possible: I am essentially his mom in a lot of way. For some people (like me, but not my husband), it's easier to get intimate sorts of help like feeding, bedpans, and sponge baths from a stranger, but some people would rather have a loved one do it. You both need to understand your separate views, because both are equally important.

Now is a good time to assess finances. If you lose his income, how will you support yourself and your family? Can you make changes to your finances to help ease that transition? Some professional advice can help. We were lucky that his employer had an arrangement with Fidelity for free financial planning, but a lot of the big firms will help you for free anyway, in hopes of getting your business. In case you don't know already, Huntington's is one of the diseases where, as soon as he qualifies for Social Security Disability benefits, he can start getting Medicare, which can be very helpful financially. And you'll need to preserve financial resources for the rest of your life, so look into that. A financial planner or elder care/disability lawyer can help.

As things progress, care will become more expensive. This is a good time to research resources for that. It took me a while to find what resources were available. For example, your local agency for the elderly and disabled, plus some churches, have a stock of medical supplies to give/lend out--hospital beds, commodes, canes, wheelchairs, adult underwear, and so on. The agency can also hook you up with other resources for financial and caregiving assistance.

As a final note, I remind you, like everyone else will, to take care of yourself. It's easy to put your own needs off, because they seem less urgent. But if your own health suffers as a result of not getting regular dental checkups, medical attention, or exercise, you can't be the caregiver you want to be. I experienced that firsthand.

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KAREN608's Photo KAREN608 SparkPoints: (93,242)
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1/17/16 7:40 P

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I prayed for you, husband, family. My husband passed last July 2nd.I had four months of caregiving with his liver cancer.

I still stop by as I pray for people.

Tears fell from my eyes, I looked at the photo of you two which is on your photo section. So young! I am at a loss for words. I will pray for you, and hope you get a little comfort on here from the ladies.

You have so much to mourn. Then such a stressful future watching your sons, hoping for health. Try to be kind to yourself.

Karen C

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SELENAMDZ's Photo SELENAMDZ Posts: 1,845
1/17/16 5:10 P

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my husband was just recently diagnosed with Huntingtons disease. Its fatal disease with no cure. There are tons of symptoms.. the brain is slowly dying and taking away my husband and making him into a different man. Right now he hasn't had any movement issues as of yet, right now its just easily angered/anger issues/easily irritated, OCD about everything (i can't do anything without being reminded I'm doing it wrong) very bipolar acting, on and off. I feel like I am watching my husband battle for his life, with no hope for him. It will only get worse with time, he will eventually not be able to walk/talk or do anything on his own. I plan on sticking with him threw it all. We have been married for 10 years and he is my soul mate. We have 4 children together, which means I have 4 sons who are all 50/50 at risk for this disease.. so basically, I now know I will most likely be spending my whole life as a caregiver. I am heartbroken.. many dreams have been lost... no more growing old with my husband. Just so many things running in my mind. I will need all the support I can get, thats why I'm here.

Edited by: SELENAMDZ at: 1/17/2016 (17:11)
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