Don't want to be selfish ...

Teetoe · ‎27-02-2016

I'm struggling with guilt over my selfish feelings of loneliness and dissatisfaction for my life - probably need a good kick. My husband has been diagnosed with dementia a couple of years ago- he is sometimes very difficult to get along with - and I so miss any companionship, joint activities, discussion and physical relationship. He is not in care but his life revolves around himself, because of the dementia. I am trying to move us off acreage into a smaller place which will be better for him once we move, but he doesn't want to go and blames me bitterly for it (health professionals and family are advocating it but the weight falls on me). The dementia causes lots of other problems with things here which I must deal with, and I am so frustrated with my life. I've always been a very out there person and everywhere I look I see happy couples doing things. We lost our daughter some years ago and this weighs heavy on both of us. I want to look after him but he resists that and at the same time doesn't like me going out doing my own thing. Most of the time I feel very lonely, empty and needy, but I know I must not feel this way. I also feel very sorry for him as he is facing dementia as well as physical pain with arthritis issues (for which I am trying to medical help).

Is there anyone else out there facing similar issues who can give me the necessary backbone to be supportive and caring and not be so selfish?

Kat1985 · ‎27-02-2016

Hi Teetoe,

Firstly, stop being so hard on yourself! You're allowed to grieve for what you've lost. Whilst you still have your husband, his dementia has changed your relationship, and you have every right to grieve for the relationship you once shared.

My boyfriend has a physical disability and is confined to a wheelchair. We have been together for almost a year. He is wonderful and everything I've ever dreamed of in a person, however prior to him coming along my exposure to disability was non-existent. Why am I telling you this? Because a month or so ago we were at a family BBQ and had to leave early as he needed to use the toilet and he couldn't get into the house we were at, let alone use the toilet. Later that night, on social media, I saw my cousins having a blast, smiling, sharing happy memories, and I felt sad that I couldn't be there and that I had to leave so early. I felt guilty for being so upset about it, and when my boyfriend asked what was wrong, I refused to tell him, just told him I was tired. He persisted as he could tell I was upset and I told him I was a horrible person because I was upset because of the photos and because I wasn't there. And he was the one in a wheelchair, and here I was, being so ungrateful and horrible, because I felt disappointed that we needed to leave early. The guilt I was feeling was definitely worse than the initial sadness. He laughed and hugged me. Told me that he'd had 32 years to grieve for things like this that he missed out on and that it was completely new to me and completely normal for me to go through processes such as this.

I guess what I'm trying to say is that this is a new thing for you. Cut yourself some slack. Allow yourself to feel upset and grieve for what once was. Reach out for some professional help if you need it, don't be ashamed to admit that you're upset. Unless you allow yourself the self-pity and to progress through the grieving process, things won't get easier in a hurry.

Stay strong, and thank you for sharing.

Kat x

pipsy · ‎27-02-2016

Hi Teetoe. I'm so sorry you're dealing with this situation alone. You don't give any indication of age, though dementia doesn't differentiate age-wise. It's a very difficult problem with dementia because sometimes you can be talking to your own group, next thing you're dealing with a child-type age group. Also having arthritis makes things difficult because you can't always be sure you are hurting him when you're trying to help him. Sometimes with dementia they say they're hurting, when in fact, all they want is attention. With my job recently I had to work with dementia patients so I do understand where you're coming from. Is he on meds for the arthritis, I suppose that too is a work of art getting him to take his meds. I don't feel you're being selfish, I hear the tiredness in you. Caring for someone with your husbands medical issues must be extremely taxing. You said he's not in care, but can you get him into respite for a few hours every week. This would give you some 'you time' and he would be with others similar. Perhaps a word with your G.P about respite. With dementia, he would initially be difficult, but I can assure you, 5 minutes after he enters, he would forget the problems he caused. One of my clients has dementia, early stages, every week he gets that worked up about going out, he makes himself ill. As soon as the van arrives to collect him, he's fantastic. Unfortunately, one of the drawbacks to dementia is the gradual recession to childhood. With going to respite, however, he would be mixing with people from all walks of life and this would be beneficial to both of you. It would help you, too when moving time comes. As far as family opinion goes, only you know how much you can take. Until someone deals with or lives with a dementia patient, they have no idea how demanding they can be. As I said, with going to respite you could accompany him to start with. After a few times of going, he would settle in, make friends.

Hope my suggestion gives you some ideas.

Fairywings · ‎27-02-2016

hi there beautiful one. There is in no way shape or form that you are being selfish in any way. What you are having to deal with only a daily basis would be so incredibly exhausting for you, not only have you are grieving the loss of your daughter but you are having to manage and be on top of your husbands illness. This is a constant thing I understand because my husband has chron's disease and some days not only am i running after my autistic little 3 yr old boy but I am also looking after him. I'm only 36 yrs old yet i feel so much older BC of the weight we carry on your shoulders everyday. I understand when you speak of being an out there sort of person just like you I'm a social butterfly as well. I hear the heartache in you and it is so important for you to look after yourself. If your his full time carer i am more than certain you will able to get some respite for him. you need it believe me when i tell you this because if your not in good health and looking after yourself how can you be expected to give your up most dedication and energy to assisting your hubby and his illness. You will find yourself having less and less energy and will struggle even more than u are so now. Depending on your location contact Carers Victoria on (03) 9396 9500 or Carers Australia CALL 1800 242 636 for carer support and services if your not a carers pension already you are so entitled to be speak to GP and he can organize this for you alongside centrelink. I hope this information has been helpful to you and you have certainly come to the right place to have a vent or have a cry as i say. Take care beautiful xx Venessa.

geoff · ‎28-02-2016

dear Teetoe, welcome to the forum.
Why do you need a good kick, because you have lost your daughter, which I am absolutely so sadden about and now your husband has dementia and I know how frustrating this can be, as I know and have known people who also have this disease and it is really terrible to see what their life has now changed into.
Their life makes you impossible for you to live the life that you once had, because they can be very demanding with what they want but then suddenly changing their thoughts onto something else, so it can be very exhausting, so it does tie you up.
It is very sad when I met my friends and have had a lot of history together when they don't recognise you, don't remember your name and what you both have shared over the years, but more so for you when it isn't possible to do the things that you once enjoyed.
Would I be able to say that if your husband was to go into a full-time care then this won't stop you from looking after him each and every day you choice to, as my sister who lived close to where our Mum was in a nursing home, took care of her 6 days out of 7 as well as getting closer to other people who had no visitors at all, this would mean that you could sell your property and then live in a much smaller place. Geoff. x

Kazzl · ‎28-02-2016

Hi Teetoe, welcome to the forum. Geoff and Fairywings have offered some good advice and support there. I just want to add my agreement - there is nothing selfish about wanting and needing your own life, interests and company. It must be very hard to achieve that when so much of your time is necessarily devoted to another person, and it must get lonely.

One of the best thing about the internet is that it enables us to connect with other people for company when we can't get out and about and be active. It's helpful sometimes just to chat and know we're connecting to another understanding person. There is a thread on this forum that is specifically for that - chat and friendship. It's called the BB Cafe and you'll find it under the Community board at the bottom of the list of boards. If you would like some company please come and join us. There's a great group there who will make you welcome. I know virtual friendships can't replace real ones, but they are better than being isolated and lonely. And on this site, everyone understands, because we've all got our own issues with mental health and dealing with difficult life circumstances.

I hope to see you there.

Kaz

Teetoe · ‎29-02-2016

Hey Kat

What a strong, wonderful and wise person you are. How lucky is your boyfriend to have you support him. I try but am very impatient. I very much value your comments. My husband's dementia is not that bad at the moment, but in many ways he is now the child and I make the decisions, which both of us react against at times. He is still driving but that time is obviously very limited. It is sad to see someone who was once so tech-savvy now unable to use a smartphone, GPS and even the remote control. Conversation with him is limited in depth and future planning, but gosh so what.

It has been an educational time for me, but in the past few days I have met some very lovely people down to earth people, both online and face-to-face, who have made me appreciate the true values in life, what it is to give rather than receive. I need this, the "kick" is perhaps from myself to wake up to what is important, and stop thinking about my own pleasures and frustration. And that thread about listing 3 things every day for which I am thankful, has been a real eye-opener. I realise how very lucky I am.

I've also read some amazing stories on this site - and to all those people who have and still do suffer I hear your stories and feel for you.

Teetoe · ‎29-02-2016

Gee Pipsy, you do really understand the situation with dementia patients, it is exactly as you describe. Yes tiredness is there, and sometimes I walk around the house at night feeling very low, but I am learning with this site to think positively. He is not ready for respite, but where we will move to are lovely supportive people from a community group that he belongs to (excuse bad grammar), and I know they will help out. I've been told to "listen to the music and not the words" - as sometimes his words and actions hurt very much - but that is in his childish days - and I need to realise that, and not take it to heart. It is the loneliness that I hate.

He is also uninterested in food and his choice has become very narrow making it very challenging to provide a nutritious diet for him - mostly sweet stuff. If I don't watch out fall foul of that too and I need to keep on top of it.

He is not on meds for either dementia or arthritis, but I am getting him to a spinal surgeon soon to see if any blocks or injections can help and also will see if he can get a knee replacement. Anaesthetics are dubious for dementia patients so need to get a spinal block for hat. Vascular dementia so no applicable meds. The only pain relief he is on is Panadol Osteo and that doesn't cut it.

Thanks again, you have been so helpful.

Teetoe · ‎29-02-2016

Thanks so much Kaz, I will take your advice, and to be sure I will visit the BB cafe.

Teetoe · ‎29-03-2016

It's come to the wire with moving and I have never been so stressed. My husband does not realise fully that he is leaving here I think. He won't let anyone touch the garage, he is angry and verbally violent and threatening physical violence. Somehow I have to be strong and get this move done. I've organised everything I can but the emotional backlash is taking its toll and I'm not sure how much more I can go with it. People are helping but he refuses to sell and dispose of stuff. They say to do it behind his back but I can't do that. He is so suspicious and taking me to task over everything thinking that I am doing things behind his back and taking things. The removalists come in two days time and so much to be done. I have people coming then to help clean up but he will go ballistic if anything is touched and how will he cope sleeping in a new place for the first night. So tired. Am posting here knowing no-one can help but maybe it just helps me to express it and let the tears flow.