Supporting someone caring for partner with mixed dementia

[kazbah]

Hi, this is my first ever posting. My Dad was diagnosed with mixed dementia just over 6 weeks ago. My mom is struggling to come to terms with it and there are days when she accepts the diagnosis and other days where she refuses to. She is 74, Dad is 77. They have a house and a mobile home which Dad loves that is in the countryside which is great. There are 3 of us grown up kids all with very busy lives and teenage children. My brother lives closest to my parents house where they are mostly so he is usually available but he has a child with special needs so sometimes it is hard on his family.
My sister and I have jobs and children at uni and looking for uni.
Out of the three of us, my Mom tends to come to me for everything which is fine but I am struggling with how much to tell her about his condition without scaring her.
I have faced the reality of what is happening but I am not really sure how even I will handle the latter stages to be honest.
I have thought about having them live with me but have thought again for the time being as Mom is so not accepting of the situation. My house is not big enough and would need extending but I am trying to pay my mortgage off so we can retire debt free which sounds so selfish - I don't want the added cost at my time of life ( in my 50's).



We are in touch with a local memory clinic and Dad is on medication (Memantine).
Dad was a danger on the roads prior to diagnosis and has now given up his license. Fortunately Mom can drive. This was hard for him but he knows that he is better off not driving. For instance, last time I was in a car with him, he literally went right round an island meeting a car coming the opposite direction!!! This happened several times.
At the moment though Dad is not the problem, it's Mom.
She calls me several times a week in tears and I listen and try to talk her through whatever it is that,s bothering her on that day.
I know it's early days and I am taking care of all the practical elements such as arranging power of attorney, getting them to appointments, applying for whatever is out there to help them but I feel helpless!
Sorry to go on and its my first time!
Any advice?

 

[Izzy]

Good morning and welcome to TP. I'm sorry to read about your dad's diagnosis.

I think, at the moment, you need to carry on doing what you're doing. Be a listening ear for your mum. It's very early days and it will take time for her to come to terms with this. I'm glad you found TP as both your mum and dad will benefit from the advice and support you will receive here.

I wondered if you (and your mum) have been in touch with your local Alzheimer's Society. There may be someone there who could talk to you both about what might be available in your area. Things like dementia drop in cafés are good. They tend to be social occasions but also give the carers a chance to meet and share their thoughts and experiences.

My husband has recently started on Memantine. I've heard good things about it on here.

Take care.

 

[steffie60]

Dementia is very difficult to come to terms with and I suspect very hard for a loving wife to know that her husband will not be the person she has known all her life. I suspect your Mum had noticed some changes for quite a while but it does take time to adjust to this dreadful disease. There is a great deal of support in this community so if your mother is computer savvy at all perhaps she might read some of the posts on here and gain an insight. For me the black hole that is my mother's VD has always been a shock to my system as we move from one change in habit to another.

The best bit of advice that was given to me in the early days was if challenging behaviour begins to show then change direction, subject or walk away. This bit of advice has been helpful with my mother who has lived with me for the past two years and I always try to stay good humoured.

There is a chap on facebook Norm Mac (Norman McNamara I think) who is a sufferer, his insights are worth following.

And of course there is a great group on here, someone will have experienced something similar to help find a path through the darkness.

You sound like a committed, loving family so just one step at a time and do not rush to make any decisions. Depending on which country you are in there are support agencies although sometimes here in the UK with reduced funding the social services may not always be able to be as supportive as they seem to be short staffed. If there is a local AH group and if your Dad likes to mix with others (my mum does not) then get him to a day centre to give your Mum a break.

I hope all of the steps you have in process will help you resolve some of the issues.
best wishes

 

[kazbah]

thank you

Thanks for the good advice. I suppose deep down I know what I have to do and in some ways I am just trying to come to terms with it too so confirming my feelings is helpful. I am bracing myself and my family for what is to come but I guess this is difficult to predict. Thank you for taking the time to offer words of comfort, I really appreciate it. Wishing you and yours all the very best. X

 

[susy]

Maybe your mom needs baby steps to be taken. She sounds like she is looking at your Dad and thinks of the worst, him still being there but not himself anymore. From what you say, he isn't there yet by any means. No one can tell how and when, how fast, how slow this dementia will develop.

Has your Mom seen her GP for her to be looked after? Is she depressed? The Alzheimers society is an amazing place to gain help and advice from. The memory clinic is where we had to go to for our social worker referral. All the services we have accessed so far have been fantastic and believe me, I'm a severe critic.

You are not alone, you have people here on TP who will try and help if they can.

 

[susy]

Sorry. I waffled a lot

What I meant by baby steps was just try and get your Mom to accept today for what today shows rather than looking far down the line and worrying about that. When that time comes there will be help as she needs it.

 

[kazbah]

I appreciate your advice thank you. If I can get the practicalities sorted, then the rest will be dealt with as and when.I am trying hard to protect her from the tedium of form filling and phone calls but there are times when she feels we are all getting on at her poor love. Difficult times. Feeling a bit more positive though having read your responses - good to read, thanks again.

 

[Spamar]

Hi
This is my first post as well! I care for my husband who has mixed dementia. He is one 80, whereas I am only 64. This never made a difference until dementia struck.
In the beginning I was helped immensely by the local Alzheimer's Society branch, who filled in forms, contacted local council services and made sure that we had all benefits that were possible. They are experts in form filling and make it easy for Carers. Very grateful!

 

[kazbah]

Sorry to hear about your husband. Again, I am grateful for your help here. I did not realise how much help she could get. I will ensure I get her in touch with them asap. Thanks and take care.

 

[Izzy]

Hi
This is my first post as well! I care for my husband who has mixed dementia. He is one 80, whereas I am only 64. This never made a difference until dementia struck.
In the beginning I was helped immensely by the local Alzheimer's Society branch, who filled in forms, contacted local council services and made sure that we had all benefits that were possible. They are experts in form filling and make it easy for Carers. Very grateful!

Hi and welcome. I just wanted to say hello. My husband is 83 and I am 62. Our experiences must be similar.

 

[kazbah]

Been to see parents today. My husband is very good with Dad and took him for a walk while I had a chat with Mom. She had a weep and said she is frightened which of course she is. She doesn't like to keep bothering us she said. We had a good heart to heart and I think she feels better for talking. I have emailed our local Alzheimer's branch so will sed how we get on with that. It is obvious she needs lots of opportunities like today so I will talk to.My siblings and see if we can set up some kind of Rota to ensure she gets time off occasionally. I am so grateful for this TO - it has been very helpful. Thank you all for,taking the time to respond. I feel (today for now anyway!) that I am better prepared. .