A carer reflects

Thought I would put a post on to summarise some thoughts I have had over the last day or so. I hope that those who are just started out on their caring journey, in particular, will find it helpful. I know that putting my thoughts down will help me.

Brief background is that my wife was diagnosed almost 6 years ago at the age of 54. I was 55 then. I gave up my job and became self-employed to look after her. Its been tough. She was admitted to hospital four months ago and is still there whilst we wait for a care home bed. The care home has become necessary because dementia kicked in about two years ago to accompany PD. It became likely to me that a care home would be the ultimate destination for my wife but I am still surprised that it has happened so quickly. The hospital (who have been superb incidentally) have essentially told me that care home is the only route to give either of us a manageable outcome. If she came back home, they think there would either be a crisis leaving my wife vulnerable or that I would burn out.

Yesterday, for the first time in four months, my wife and I went out for three hours. We went to a local shopping centre, had some lunch and a look around a couple of shops before I took her back to the hospital. I was quite emotional afterwards and I couldnā€™t understand why straight away.

I realised how much that trip took out of me. Being alert for three hours, making sure that she could get out of the car without trouble, she was safe on her rollator, she wasnā€™t bumping into anyone or anything, she could sit down easily, she was OK whilst I queued for food, she could eat her lunch easily, she wasnā€™t spilling her coffee, she wasnā€™t spilling her sandwich, we could get to the shops she wanted to go to, we could get back to the car easily, I could get her comfortable in the car, I could park at the hospital in a place where I could get her back to her room easily etc etc.

Reading that back I appreciate that, to some, that may seem trivial stuff. But it made me realise that when my wife was here, that was my life 24/7 and I do mean 24/7 as neither of us had a full nights sleep for two years up to this Summer. This isnā€™t a pity post though and I know that however hard it was and is for me, it is ten times worse for my wife.

In our case, the thing was that the caring need increased negligibly day by day. Looking back, it seems that each month I did a little more, not so much that you would notice comparing one month with the next but over a period of five years, it grew significantly. No-one asked me to do this, least of all my wife. Like all carers I think, I did it out of love for her but Iā€™m now not under any illusion how much it has taken out of me and also how much it affected my relationship with my wife, which for a few months earlier this year was much more patient and care than wife and husband.

Now that the nursing staff have taken over much of the caring responsibility, our relationship is back to ā€œnormalā€, albeit that the outcome is not what either of us expected or would have wanted in an ideal world. At the moment, I think we would both settle for my wife getting good care from professionals and a solid relationship between us.

If you are at the start of your caring role then I say all of this not to scare you but to help you become aware of the path that you may be on. Stay in the present and be alert to the small changes in the condition that require more help. Be prepared to shout for help from others and try not to assume (as I did) that you can do everything. It that way, you might be able to keep your relationship with your lvoed on on a even keel which can only help both of you.

As all of us in the PD community know very well, everyone is different, and everyone is affected differently by this condition. I hope that you are better able to cope that I have been.

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Hello Seansdad
Sounds to me like you have a huge bag of emotions going on with your wife and relatively after a short period of time following diagnosis. Life sucks doesnā€™t it.
I donā€™t think any of us can be prepared for the Parkinsonā€™s journey be it the person diagnosed or the carer, loved one.
Iā€™m 12 years into the trip as a carer fir my husband and you are absolutely right about the level of care you provide creeping up on you. Reading how you described the stresses you felt in taking your wife out was quite surreal to me, I thought yes, yes and yes that is how it feels. Itā€™s constant that having to think ahead all the time. I think having had a break makes everything more noticeable more acute too.
You donā€™t mention any other support you may have or indeed if youā€™re still full time parenting yourself. I hope you have someone else to connect with who can be an ear and a shoulder to lean on.
The Parkinsonā€™s UK Helpline is open to carers as well as sufferers and have lots of information and avenues of support, Iā€™d give them a ring and talk through your situation if I were you.
There is definitely no ā€˜ you lasted longer as a carerā€™ than I worth considering, no comparison necessary or possible as you say everyoneā€™s needs are different and subsequent caring needs very different too, particularly with Dementia in the equation so please donā€™t criticise yourself in anyway - you are still there, doing the best you can.
It is good to hear your wife is receiving good medical care and you are being given the truth of the situation and advice.
Perhaps you might want to consider returning to some work, something for you to give you another focus. Options to consider because you must consider yourself going forward when your wifeā€™s needs are settled.
All the very best. Jane

Hi, Iā€™ve been caring for my husband for approximately 3.5 years now. I find it incredibly lonely and also frustrating. My husband will not accept any support or help. Even though it has been explained that it would be beneficial to us both if we had respite for even an hour a week. He just refuses point blank and says he doesnā€™t want strangers or anyone else in the house. When his specialist comes to see him he will always say he is fine. I however try to be honest so that the have a clear picture. When the specialist was here a couple of weeks ago he did say ā€œthings are no different to what was expectedā€. I know I need a little time to myself but just donā€™t know what to do anymore. I think itā€™s amazing that you have been honest about your personal journey. I question how will I know whether to ask for help. Do I need to wait for my husband to not realise I am seeking help? I feel guilty writing on here how I feel as if he knew if would be mortified. No matter how I say I need to get a little support he just says we are fine as we are. He is unable to cook or make a cuppa but he is able to eat unaided. I manage his medication, finances and everything else. Caring for carers has been a lifeline doing various craft sessions. Apologies I am not looking for pity but more ideas on how to manage the situation. I love my husband very much but I do miss the man he was. Thanking you all in anticipation

Hello Westpest ā€¦ You donā€™t say what age you both are.

One option for you might be to install cameras in the house so that if you did go out on your own you would know he is ok. I know people have them to keep an eye on pets / children by this method.

Your health & sanity is just as important as his health is. The man you married would want your happiness the man he is now does not understand.

That is one thought for you, Iā€™ll have a think about other ideas I might have.

My Father had dementia & lived with my brother & his wife but things became impossible & he went into a home. He enjoyed life there but was VERY unhappy when the idea was first put to him.

I would also suggest you get in touch with your local PCN care team. I did & got a lot of help. I live alone & have Parkinsonā€™s & a few other health issues. You can contact them direct or get referred by your GP.

What is the PCN team in the NHS?

The PCN team works with the district nurses, community geriatricians, dementia workers and Allied Health Professionals, such as physiotherapists and podiatrists/chiropodists in the community, joined by social care and the voluntary sector.

Best wishes
Steve2

Hello Westpest, I am sorry to hear you are having such a difficult time and there are no easy answers. I just wanted to make sure you knew you can get a Carers Assessment in your own right. It is completely separate from any assessment your husband may or may not agree to undergo; it is about you and your needs and can be a good place to start - if only for highlighting the sorts of things that may be available to you even if you decide you do not want to proceed any further than completion of the actual assessment. It can also serve to clarify what the main or most pressing areas are for you rather than feeling overwhelmed by everything like it is in one giant pot and you canā€™t see a way forward. Please at least give it some thought. You will need to contact the Adult Care Service at your local council and it can be done online, by phone and usually face to face - although this is likely to be within specified times and in some cases and they may operate an appointment system, so check before you go.
Good luck
Tot

Hi Steve

Thank you for your reply. My husband is 71yrs and I am 62yrs. I think part of the problem is that my husbands family refuse to speak to him. My own family are a brother that lives over 700miles away and has his own Iā€™ll health. I have a son that lives about 500 miles away, so distance is a difficulty. We both worked for a large public limited company and thought we had friends however since finishing working they have all disappeared. With regards to me getting a carers assessment, I had no idea this was possible. Iā€™ll look into it to see if I can organise this. Your idea regarding indoor cameras is something else Iā€™ll look into as itā€™s a brilliant idea. Thank you for sharing its really appreciated and extremely helpful

Good afternoon Westpest ā€¦ Sorry to hear your husbandā€™s family donā€™t get on with him.
Another idea I had was why donā€™t you get a dog. ? Company for your husband & lots of long walks for you.

Another idea is to get a cleaner in for 2 hours a day. Tell your husband your back is hurting ā€¦ Two hours where you can go out ā€¦

Best wishes
Steve2

Hi Steve

We have a dog and sheā€™s amazing company. She is literally glued to my husbands leg. My husband canā€™t walk much. He is incredibly wobbly and his blood pressure takes a nose dive. Your suggestion for a cleaner is fantastic. Funny thing is I do have a very painful back so this would work perfectly. You are a star, I would never have thought of this. Thank you so much for your help :star: