Scared of future with husband with dementia/advice and help please

boogerbear

Scared of future with husband with dementia. He is very stubborn and that scares me. Adivce and help please!

Carol

terei

My advice is to take a few hours + read lots of the posts on this site. You will get a lot of information about what is in store as well as suggestions for books to read.

ButterflyWings

Boogerbear, Welcome although I am sorry you are faced with this difficult disease but glad that you found us. This is a very strong circle of people who are living the same bad dream. Yes, it is like a horror show at times. And for sure, no happy ending though we find ways to make peace with planning a safe future with compassionate care. And terei is right, you can get lots of good information support here.

When you say scared, do you mean scared of your husband? If you feel like he may hurt you at any time, that is not ever OK. The anger and threats and even physical attacks do happen sometime with the brain and personality changes in some PWDs. This requires an urgent safety plan for YOU, if so, and usually meds for the LO.

Jo C.

Hello Carol, and a very warm welcome to you; so glad you have found this wonderfully supportive place. If you can give us a bit more information, we will be able to give relevant input. Finding oneself in such an unexpected situation can be stunning and fearful on different levels, especially as in regard to the future which has been set upside down after receiving such a diagnosis and especially when behaviors begin to change. We are all here to listen and to support as much as we can.

I would like to suggest that you place your Thread on the Spouse/Partner Forum; there are many spousal caregivers there and many have been in similar circumstances; you will likely get much input from what you write.

The Alzheimer's Assn. has a 24 Hour Helpline, 365 days a year and can be reached at (800) 272-3900. There are no fees for this service. If you decide to make a call, ask the nice person answering the phone to transfer you to a Care Consultant. The Consultants are highly educated Social Workers who specialize in dementia and family dynamics. They are very supportive; it is a good place to be able to vent one's feelings, to get information and also often to be able to have assistance in our problem solving. As said, there is no fee for this service.

We are all here in support of one another and that now includes you too! Many of the caregiver spouses have much experiential wisdom to share from their ongoing experiences.

Let us know how you are doing; that is very important. Please do continue to come and read and share; we will be looking for you. With warmest of thoughts being sent your way,

J.

Jo C.

Dear Carol, I have been thinking of you and wondering how you are. If you have time to drop a line or two, it would be great to hear from you and know that you are alright.

J.

boogerbear

I am a little better but I do feel very alone since there is no one to help me. His family is gone so it is just me. He refuses to see my family. Does this happen to people also?

CorrieG

Hi Boogerbear, glad you’re here, not glad you have to be! My husband is also very stubborn.

He has gotten progressively meaner to me (verbally, not physically) as time has passed.

He will often listen to someone else over me. Can you get paid help? We have a place called Home Instead that sends a companion/caregiver for several hours a few days a week. Not cheap but doable.

Also, choose your battles. I work hard to make sure he eats, drinks, and takes his pills. I let many other things slide and try to be patient. Honestly, it’s a lot like having a toddler.

boogerbear

Yes, I have a toddler! MH can get verbal if I argue so you are right, let it go. He has been a recluse and makes it hard for me to see my children by complaining. I have thought about renting an AB&B house during the holidays.

Thank you for your comments. It is NOT easy.

SusanB-dil

Hi boogerbear - Tell his doc about the agitation, there could be a med to tone that down a bit.

MIL is very stubborn as well. Our biggest issue is taking meds or even just being there. She insists and has told us that "you people are just here to aggravate me!!" She refuses to use her cane - says it makes her look old, among other things. Just very recent - Her doc normally asks 'have there been any falls' (since last visit). She replied NO! DH told her 'oh, yes, there were 2, and 1 required a trip to urgent care for a cut'. She gave him 'that look'... (you know - that 'evil-eye' if looks could kill type look) After we left the room so her doc could work with her, she told the nurse's aid, while giggling.. "I could fall all day long and nobody would know because I won't tell anybody ~giggle~" Her doc even mentioned to DH after her appt "I see you have your hands full."

'please drink some more water, or would you like some water with that' "NO." 'you really need to finish up your pills' "Maybe later"... (later would never come if we allowed that)

Yes - Toddler.

So do know you are not alone...

boogerbear

Thank you all for your comments. There are days when I just want to leave for awhile. Rent an apartment and go visit him but can't. Is this selfish of me? Since he does not want anything to do with his daughter or my family, I get very resentful. He is okay with the grandkids but always wants to know when they are leaving. I feel VERY confined.

Boogerbear

SusanB-dil

No - that is not being selfish. That is you looking for some self-preservation, which is necessary.

None of 'this' is easy. I know you said his family is gone, but is there a friend or someone who could stay with him for just a little while, even once a week? so you could just get out and do something for you? Maybe even an adult day-center you could utilize once in a while?

pookabera

Hi! Joining the thread to add some solidarity: my Mom and I are dealing with similar circumstances. My Dad is VERY stubborn and has always been, and we've been saying for weeks now that it feels like his pre-dementia personality is made up of the some of the worst traits to go into this sort of disease with.

He can be very spiteful and reclusive. Over the years, he's become more reclusive and only wants my Mom around when he's agitated/tired/anything-other-than-happy. But even then, if he gets upset with her he tells her to leave and that he wants a divorce, etc. It appears that he gets jealous if he feels that she's not paying attention exclusively to him.

Wanting space away from your LO (done in a safe way where he still has support and supervision) is not selfish at all. You cannot pour from an empty cup.

My Dad has no family on his side at this point other than me. There's usually about half the day where he's happy to see me and chit-chat and then the other half is him grumbling about not understanding why I'm always here and why I don't go to my own house.

Reaching out for help, doing some research, and having some sort of plan in place for if and when you DO want some sort of time away or in-home support will go a long way in the long run.

Jo C.

You have received some very good input. It may be worthwhile to contact the Alzheimer's Assn Helpline with the number provided above so you have someone to talk to. However; it would be far best to have a counselor to meet and talk with one on one; it could bring much to you and help with the issues you are facing and provide direction.

It is also probably a good idea to communicate privately with your husband's physician re the consistent, unrelenting agitated and unreasonable behaviors and the need for him to have medication to help lower the agitation which is threatening. That can make a difference.

If ever you feel physically threatened do NOT hesitate to call 911 and let them know your husband has dementia and is threatening you or is trying to harm you or has harmed you. Always keep a cell phone near or on you and know that there is a room you can lock yourself in with you phone if there is a feeling of danger or you can get out of the house easily. Also; all guns should be removed from the house when he is not present; as well as anything that can be used as a weapon such as knives, scissors, wrenches, hammers, etc. need to be put away out of the line of sight should he suddenly become so agitated he may be a danger. Not all persons with dementia are a physical threat; we do not know what your husband is like, so that is why this is mentioned here.

Not at all a negative for you in wanting to get away and find some way to recoup your own energy and peace. If you can do that even whether for a few hours on occasion, or a day or two away or more, that is absolutely fine. I used to go to the ocean and sit for an hour or so just letting my shoulders go back down from where they had been above my ears. Even a very short time of getting away can be helpful.

If you have no one to leave your toddler with while you get out of the house, it may be a good idea to begin to look into that now. Some cities even have free or low cost toddler care nursery school centers that can be very helpful. You toddler probably also needs some peaceful place to play and share too.

Some folks have a place of worship such as a church that is helpful in fellowship and even some with hands-on assistance. Finding a place of support whether a church or a support groups, a counselor, etc.; that can make a big difference. I hope you can find such support.

It may be that a one on one counselor could be very helpful in working through all of the issues you are facing. So hope that you are able to find a place to get some good advice and relief from the stress you are living with. You are absolutely right on spot in needing to get some relief for yourself. I wish you well.

J.

boogerbear

Thank you all for your advice. I did talk with my Pastor and he ask me some questions that were helpful. He has calmed down but will have anxiety knowing someone is coming or staying over. I was letting him know by preparing him but then he ask all the time when. There is really no support group her but I know by talking to people who have gone through the stages help me. Still, you can feel all alone since no family is around. I do let my friend know that I will be gone for overnight and just in case his confusion turns in to craziness. Does this happy with you?

SDianeL

We all understand what you're going through. It's terrifying. Please read the book "The 36 Hour Day" it helped me so much. Explains their behavior and how to handle it. My sister & my DH have dementia. It's not that they are stubborn. They just don't have reason or logic anymore and some lose their emotions. Definitely ask the doctor for medication for him. My husband just started on Risperidone at night and it seems to be helping. Don't tell him ahead of time if a caregiver is coming. They obsess over it. I tell my DH just a few minutes before they arrive. I tell him where I'm going and when I'll be back. My DH has been great with the caregiver. He talks non stop while she's here and she quietly listens. Made me wonder what I was doing wrong. Everything seems to be an argument. I think it's because I'm the one always telling him what to do and he resents it. Who knows. I am learning to not take it personally and understand more that it's the disease. Someone here said you can't reason with a person whose "reasoner" is broken.