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Anyone else....
Posted: Saturday, February 2, 2019 10:12 AM
Joined: 1/10/2019
Posts: 20

I’m 37. Mother of two boys (11 and 8). DH diagnosed with dementia of the alz type. He is 45 years old. He stopped working in July. We’ve tried a few meds but have a hard time working through the side effects. We are trying the patch. Some days are good- he is present, talks, and seems almost like himself. Other days he is withdrawn, cranky, and impatient. He sometimes visits fiends but then needs hours to nap. I read a lot- so I have a good idea of what is coming—- just not when. I’m torn between holding him back from things he wants to do to avoid the disaster we would experience to find out he can’t do it mymore. It’s like waiting to buy a fire extinguisher until your house is on fire .... sort of. Maybe that’s a lame analogy. Anyway- a lot of what I read and a lot of the folks who post are in very different situations and I’m wondering if there are others in my same situation. In our same situation. Having a alz friend might be good for DH too. So.... here it is- an invitation of sorts..... wanna be friends?
Posted: Friday, February 8, 2019 6:24 AM
Joined: 9/12/2013
Posts: 3556

I don't know why no one responded to you before.

are you asking if he might like to join the board discussions here? Help him try! Love to have people come here and find online friends.

I'm so sorry you are all going through this, it is hard and requires constant adjustment.

The foundation is making a place for him to be comfortable. Easy for him to navigate. That will lower his stress and anxiety. If he can be out in nature everyday it will likely help a lot too. Feeding birds, walking, parks, that sort of stuff. Sometimes noise levels are draining, music can help or annoy.

sounds simplistic it takes a lot of thought and effort but once he is in easy surroundings your life will get much easier. Maybe he already is in this situation.

I hesitate to say more because I don't really know.

Trying out the medications to find if anything helps is difficult to go through. I did not find any I could tolerate and use alternative which works extremely well for me. Actually I take a small dose antidepressant but NO ativan or stuff unless in critical trouble.

Please invite him to join or find him easy people to visit with. Dogs are usually perfect helpers.

please share more and maybe people will know how to respond more helpfully.

wonderful you are looking for ways to make this easier!

Posted: Friday, February 8, 2019 9:32 AM
Joined: 12/4/2011
Posts: 18535

A welcome from me too.

My husband was diagnosed first with MCI, then Parkinson's and then finally Lewy Body Dementia (LBD). From what you have written I suggest you look into how your husband was diagnosed and the possibility of LBD. since there is fluctuation in your husbands behavior.

I also suggest posting also on the spouse/partner forum. It too will be help you get some answers.

Regarding your husband joining, do you think he would want to?

Posted: Saturday, February 9, 2019 11:26 PM
Joined: 1/10/2019
Posts: 20

Thanks for the input. DH is struggling accepting his diagnosis and I’m not sure if I can get him online but I would sure like him try. We went to an alz association meeting - he made it 45 min and we had to leave. All the facts about what his future likely would look like was too much. Not to mention we were in an unfamiliar place with a bunch of strangers. He much prefers to be home. 

We are looking into LBD. Getting a sleep study hopefully soon. He doesn’t really fit any one diagnosis- sort of a mixture of FTD, LBD and Alz. 

He had an episode that he describes as a reaction to the patch and hasn’t been willing to put another on. We have both decided they are not worth the side effects. Maybe we will try some natural strategies. What works for you??

Posted: Tuesday, February 12, 2019 9:43 PM
Joined: 1/11/2019
Posts: 70

My heart goes out to  you both.  This on-line outlet is an amazing way to communicate, for for him and for you.  Note: that depression comes with brain diseases/injuries.  Once I got the depression under control I slowly was able to communicate without studdering, finding words improved and fatique slowly resolved.  Depression and anxiety goes hand in hand with newly diagnosed folks and can last while we processes this devastating condition.  I am 18 months from my diagnosis.  DH is very fortunate to have you by his side.   Please encourage him to post, it's amazing how quickly I was welcomed and how much understanding and comradery is out here.  Not to mention subject matter experts. 

So young DH is.  I was diagnosed at 57 which is technically young for the type of dementia I have.  WMD - White matter disease = vacsular dementia.  Yes, I also started at the MCI stage.  Be as patient and compassionate as you possibly can as he goes through the phases of grief.   It was the most difficult part for me and mine. 

Thinking of you.