Knows he's ill

[Heylowe]

We made the difficult decision to put my dad in a home a few weeks ago. He's settled ok but it's so hard. He's painfully thin as only eats tiny amounts of anything and he has deteriorated dramatically.

Although he has Alzheimer's, my dads seems to be physical - he can't walk or feed himself and communication is a struggle. On a good day I can
Just about understand him but on a bad day, he makes an awful continual groaning sound. I know his brain is affected but he's so sad and today managed to say it's ok for me as I wasn't ill and he's trying to get better but he can't!! Heartbreaking.

The other patients seem to be jolly and funny without many cares - all walking around but my dad seems so much more physical but with his brain still understanding how ill he is. I find it so sad and in some ways wish he didn't know so much. He's so poorly and I'm sure is close to the end as doesn't really open his eyes anymore and barely eats.
Has anyone else experienced this? Thanks - feel better by just writing it down! X

 

[Amy in the US]

Heylowe, I am sorry to hear about your dad. This must be so difficult for you.

I was just at a workshop today given by my local Alzheimer's Society. The lovely nurse teaching the course said, several times, that no matter where your loved one/PWD is (at home, in hospital, in a care home), you are and will always be, their primary carer, just not the only carer. Now you have a team of professionals to help you, but you are still the main carer and still very much in a hands on caring role. So please try to remember that. It can feel like we are abandoning our PWDs after a move to a care home but that is not the case at all.

When my mother moved to her care home, and especially when she moved into the dementia wing, I also had a sense that the other residents were settled and happy and not so poorly off as my mother. Well, some of them are very mobile, and still very good at hostess mode, but as I've gotten to know the other residents better, and spent more time at the care home (especially at different times of the day, mealtimes, and at night ) I understand better how impaired they are as well, each in their own way. So don't think that you have moved your dad to the wrong place or that he is the only one there with issues; it just might not be obvious right away.

Alzheimer's does cause problems with functions such as walking, and communication, it is part of the disease (barring other medical issues, of course). As you say, some days are good days and some days are bad days and everything is more of a struggle, for you and for him. Sometimes just holding his hand is enough of a way for you to say, I'm here, I care about you. Sometimes just being present in the room is sufficient.

I think that a move to a care home is a big adjustment, not just for the person with dementia who moves there, but also for the family. It's important to give yourself time to get used to this and to experience your feelings that may be overwhelming at the moment. Right now you sound sad, which is understandable, but if guilt tries to creep in, be sure to whack it with the pointy Guilt Monster stick. That Guilt Monster will do you no favours, and sap the energy you need for dealing with other issues, so don't listen to it!

You have to remember that the dementia, the disease, is what is causing brain damage and loss of function for your dad. It's not anything you have or haven't done. You didn't cause this, you didn't give him the disease, you are not to blame, you are not a bad person, you haven't done anything wrong. The dementia is at fault, not you. Keep repeating that, until you believe it, and try to be kind to yourself. Anticipatory grief comes along with this disease and I wouldn't be surprised if you are feeling some of that right now.

It's all very hard, and I am sorry. Best wishes to you.

 

[Heylowe]

Thank you for your reply. I think yesterday it hit me when he said he can't get better. I do feel sad at the moment but it's just one of the many emotions we go through!
Some days are definitely harder than others!
Sounds like a good workshop you went on!

 

[Amy in the US]

Some days are a LOT harder than others, you are so right about that!

How are you today?

 

[Tillybuc01]

That was wonderfully put, Army in the US. Although I am nowhere near that stage of considering a care Home, it made me feel better. Thank you.