caring for Hubby with Dementia

[misties]

I just need someone to talk to.

My husband has dementia not fully diagnosed as yet in the interim they are saying vascular but could be lewy body.

Mostly I can cope but on his bad days I feel so helpless, he tries to do simple things and when he is struggling and I go to help he gets angry.

Some days its so bad he cant figure out how to take the catch of the screen door and gets very frustrated.

I am sad I am losing him, when we go shopping his walking has become a crawl.

[indigo22]

Hi misties,

I think I can be of help here. My father had vascular dementia after a couple of mini strokes.

At first he was just trying to manage himself as best he could. The frustration grew as he could not manage certain things anymore and because he had always been independent, the anger also grew. I want to assure you that this is a natural progression with dementia and the anger will subside with time. You just need to ride out this particular phase as best you can.

I would suggest first asking if he wants your help before trying to help, he is angry with his predicament, not you. Give him a chance to try by himself and let him know you are there if he needs you to help.

It is important to realise that with dementia, the signals that used to go from the brain to the limbs are no longer working efficiently, hence the slow walking. It may be a better idea to do the shopping alone and go for walks together in a park (or similar) when there is no rush to get things done and you can just enjoy each others company.

My dad had to have a wheelchair eventually, he could not manage with a walker anymore and was in danger of doing himself harm so it was the best solution. To give you a time frame of the changes with my dad (keeping in mind that may differ with your husband) - It took about a couple of years to get to the wheelchair phase, eventually his anger changed to a more accepting and calm state and the walls he had always had up, began to come down.

I want to assure you that his long term memory should remain untouched but his short term memory will be affected so you may need to remind him often about things you have said recently. You are not losing the whole person you have always known, but he will be different in your day to day interactions.

I am truly sorry that you are both going through this, it is not easy for either of you. Can I also suggest that you think about therapy for yourself in order to look after your own mental health.

I hope this helps and please feel free to continue the conversation if you wish.

indigo

[misties]

Thanks so much for your cancer re your dad. I think you are correct  with me getting some help for my own well being.

We two are one an I am afraid I am losing him.

I also understand about his old memories, I try to engage him with his old memories often.

I am more upset by my inability at times to repeat myself to him as I think omg I told him that twice already and he is picking up on my frustration and me looking at the ceiling. I have told him I am so sorry I am not coping at the moment

[misties]

That was supposed to say Cander 

[indigo22]

I do understand, albeit not from the same perspective.

There are some things you could do that the doctors may not talk to you about:

His diet will have some effect on his memory, there are a number of foods that are known as Brain Foods that can help to keep the brain as healthy as possible. I am not suggesting they can reverse what has already happened, but can help delay things getting worse and may help with new neural pathways. This information was not as widely known when dad was going through this about 25 years ago.

Some doctors still don't understand the role diet plays in our health or lack there of, so can I suggest you do some research into the best foods for the brain so you can incorporate these into the daily food intake for both of you (which will also help to keep your own brain healthy). Most of them are easily incorporated so you do not need to spend copious amounts of money to do this.

For example, Omega 3 Fatty Acids are an important food for the brain, one way to add more of these is to grind flax seeds and chia seeds and then add them to the top of salads, steamed vegies, porridge etc. They need to be ground as they are not easily digestible when whole and you will lose the benefit.

Another brain food is broccoli, which can also be grown as sprouts or microgreens very easily at home in a small space on the counter top. Sprouts and microgreens contain all the nutrients but don't need to be cooked so you get all that they have to offer. They are ready to eat in less than a week for sprouts and about 10-14 days for microgreens. They can also be added to salads, sandwiches, and many other dishes as an extra boost of nutrients. 

For your sanity, try writing down some of the important things and leave them where he can see and read them. This may help with repeating yourself. I know it is hard to do, but becoming frustrated is only hurting yourself in this situation as there is nothing he can do to change it.

My dad couldn't tell you what year it was but could tell you stories about his youth and remember words to songs he hadn't heard in years. That is just the nature of the illness and he is still in there, he is just not as present as he once was.

I am glad you are considering support for yourself, it is near impossible to support someone with mental illness without it affecting your own mental health.

Come back and talk whenever you need to, we will be here.

indigo

[therising]

Hi misties

My heart goes out to you so much as you face one of the greatest challenges a loving partner can face, losing someone so gradually and so painfully. Your husband is incredibly blessed to have you in his life, helping him navigate.

Dementia Australia can be a very helpful organisation, when it comes to the both of you navigating your way forward. While I thought I knew a bit about dementia, it wasn't from personal experience. With my dad now going through the various stages of dementia (Alzheimer's specifically), it's come to be a learning experience. The emotional side of things has probably been the greatest learning curve. There can be so many different emotions that come about, such as anger from frustration, intolerance and the inability to lead someone with dementia to relate to reason. There can also be a sense of disappointment with elements of grief and loss. So many different emotions. Of course, how a father/daughter relationship is impacted by dementia can be very different from how a loving couple experiences dementia. So many different factors in play. One of the key things all relationships do have in common, regarding dementia, is the need for education. Preparing and managing through education can be so incredibly important. Through some education, I found I wasn't beating myself up so much at times. Through education, I found moments of anger, grief and more are normal for a friend or family member to be experiencing. There can be tips on how to not only manage such emotions but better understand why they come into being. By the way, 'Sundowning' in dementia is something I never knew existed until I was led to understand it and be better prepared for it (mentally and emotionally).

With me not having lived with my dad beyond my younger years and with him now in full care (assisted living in aged care), there are certain challenges I've never had to face that you will face while living with your husband. This is where carer and spouse support specifically are so important. The frustrations can be greater, the grief can be greater, the exhaustion can be greater and you need the support to navigate what is possibly the greatest challenge of your relationship together. You deserve the support. 

❤️