Dementia: I’m Exhausted From Being A Care Partner

Yesterday turned out to be a very challenging day and I’m now physically, and emotionally, exhausted.  Being up from 3 am is not the best start to anyone’s day.  Then at 1pm Maureen went on the attack following me leaving her with our carer, while I went out in ‘her car’.  Later in the afternoon there were lots of tears about not knowing where she was, and the things she can no longer do.  I spent a large part of the afternoon assuring Maureen ‘that they couldn’t split us up, and I would be by her side until death us do part’.  Towards the end of the evening all hell was let loose, as Maureen turned on me.Image result for I'm Exhausted Graphic

No-one could sustain the amount of effort that is now needed to give Maureen the support she needs at the moment. The time I spend just trying to keep her settled means that I hardly have a life of my own.  Just joining in with the hunts to find missing (‘stolen’) gear takes up an extraordinary amount of time.  If I’m not on the ball she can wander off looking for me, even when I’m another room.  Her emotional needs are exceptional, and can be totally consuming.

At around 9.30 pm yesterday evening Maureen decided that I wasn’t her husband: he had gone out. She thought he might have been upstairs; so she went to look for him (me). Maureen became so distraught, with a strange man in the house (me) that I asked Kate our neighbour to come round to try to reassure her.  Unfortunately, this didn’t make any difference.

Shortly after Kate left, Maureen became very hostile; making all sorts of accusations.  She was completely taken with my ‘game plan’ of ‘taking over the house, her car and all our belongings’.  It was after 11 pm before Maureen went to bed, and I took refuge in the spare room.  Just before she turned in she said, with anger: ‘you don’t care about me at all, you are just trying to take everything but my children won’t let that happen’.  I have never seen her quite like this before I don’t think she realised who was the audience for her outbursts.

At 4am this morning I could here her moaning in the marital bedroom.    I entered the room cautiously, and she said ‘she had been talking to the man’.  I settled her with; a drink,  a tablet for her sore mouth, and joined her in bed.  It didn’t take longer to ‘nurse’ her back to sleep.  She is well away now while I’m typing, and trying to collect my thoughts.

Maureen has awoken a couple of times in the last hour.  She is wanting to tell me about the events of last night concerning the strange man, who said he was her husband.  The man she is talking about is that Paul (me) who worked with her in Coventry.  She is very frightened and is seeking continual reassurance but wanting to tell me things in case she forgets them.  When I look back I made many mistakes last night as I tried to ground her: exhausted Care Partners all struggle to make the right interventions!

Fortunately, Sue our social worker will be here at 11 am this morning for a routine call.  Sue’s assessment is that Maureen has capacity, and if she doesn’t want to be left with carers we have no right to force such arrangements upon her.  Unfortunately, all Sue has to go on is what she sees, and hears, in her occasional visit. It would be difficult for anyone to see much beyond the ‘hostess mode’ that Maureen perfects when professionals call.  Therefore, her functional capacity and ‘out of character’ behaviour are kept well- hidden from professional staff.

The immediate priority is to help Maureen settle down, and re-establish domestic bliss.  I think it is an opportune moment to seek a Case Conference to consider Maureen’s presentation, and my responses as a Care Partner.  In the interim period there are a number of measures that need to be in the pipeline:

  1. To check for UTI or other type of infection.
  2. ‘Maureen’s car’ to remain on the drive unless she is going out in it.
  3. To review carer sits: nature and frequency
  4. To encourage Maureen to take more exercise.
  5. To try to entice Maureen into new activities: particularly in the evening.
  6. To organise carer respite, possibly overnight, ASAP.
  7. To reduce pain in my limbs, and left shoulder.

 

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About Remember Me

I am a retired adult educator. My wife had a stroke in February 2014 and now has mixed dementia. Her recovery from stroke has been exceptional apart from 50% loss of peripheral vision and vascular damage. 'Dharma For Dementia' is my approach to being Maureem's Care Partner: it aims to end the suffering of 'Prescribed Disengagement' (Swaffer) .
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10 Responses to Dementia: I’m Exhausted From Being A Care Partner

  1. misifusa says:

    I’m sending you strength, healing and hugs.

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  2. Remember Me says:

    Many thanks my misifusa your good wishes are warmly appreciated.

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  3. So many challenges and things to tend to! It’s no wonder you’re exhausted. I admire your constant efforts to refocus and prioritize needs. I hope today has gone better than last night.

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  4. Remember Me says:

    Thanks Lemony so far so good. I don’t think tirednedd helped either of us yesterday. We both need to consider the best way of managing our energy levels to keep our heads above water.

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  5. tellthetruth1 says:

    I so felt for you, reading through this. Lived through so much of it in the past, and may yet do again. Strength and courage to you. I suppose you could record with video some of the unseen challenges to show to other care partners? Could or would that be a viable option?

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    • Remember Me says:

      Good to hear from you again and thanks for your support. I think trying to video would feed paranoia that I’m up to no good. Just have to tough out out when dementia takes over.

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  6. alijory says:

    Exhausting just to read let alone live through. I hope you can get the help you need to settle the situation down for both your sakes.

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    • Remember Me says:

      Happy New year my friend hope all is well at your end. It has made such a difference to get a social worker on the case who understands dementia and is efficient. As you will see from today’s Blog things are now moving in a positive direction: ‘slowly, slowly, catchee monkey’. Dementia being the monkey of course!

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  7. Leah says:

    I am close to exhaustion just reading this post. I can not fathom what your day to day is like, but I thank you for this insight. I can’t help but comment on the list of measures that need to be looked after; only one item is directly about you and it is last. Read your list again. You are exhausted and in pain. Take care of you. Please.

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