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Introductions: Are you caring for someone with dementia?
Caregivers: Dementia | Last Active: Aug 16 2:33pm | Replies (762)Comment receiving replies
Thank you, Scott, for inviting me to join this group. My husband was diagnosed about six years ago and things have deteriorated very fast in the past two years. I am the only caregiver as our only child lives about 3000 miles from us as does her only child. I have a caregiver come in for two hours every morning to get him up and dressed as I have two torn rotator cuffs and can't life him. Then I have someone come in for two hours in the evening to shower him and get him to bed. During the day I am required to get him to the bathroom and table so I can feed him his meals. He is 78 years old, a retired Air Force Officer and it is killing me to see him like this. Plus it is killing me trying to take care of him. I think about taking him back to Assisted Living where he stayed for two months but he was so sad there and expected me to be there at least 8 hours each day. I feel angry, guilty, tired and very depressed but always tell myself that tomorrow will be better. Our neighborhood is lovely but not one of those where you drop in at your neighbor's for coffee. One couple drops by to check on us about once a week but the others may call and say "call me if I can do anything" and I am not the type of person to ask for help. Some days I just don't want to get up and that is very weak and I know that.
Replies to "Thank you, Scott, for inviting me to join this group. My husband was diagnosed about six..."
@IndianScott. Thanks for the encouraging words. It seems you have been where I am now and I appreciate knowing that I am not the loser I sometimes think I am. But today was a good day. I took 90 minutes out tonight, hired a givegiver for a longer period of time and spent those few minutes with 12 great female friends working on a project for others. It made me feel so good to be able to have a conversation about mundane things - not about the problems I face everyday. Now I think I have the courage to face tomorrow and whatever it brings. I loved your statement that courage is simpler taking on our "fight" for our loved one the next day. You are so right. One question though - did your wife get upset when you took a few minutes for yourself? My hubby tries not to show it but I always pay them price the next day.
Good morning @tntredhead. YES, always! Earlier in her disease I had a job and while she understood my being away for that, she did not take well to any other absence. Then after I was fired by a new boss who didn't want an employee who 'had split allegiances', she became much more so. She wanted me in her sight all the time! ALL the time.
Part of this, I was told by her neuro-oncologist was very common with brain cancer/TBI patients in that they often lose their ability to comprehend the concept of multi-tasking. My wife would get upset whenever I would simply glance at my phone, or the newspaper. Our home went the last 9 years of her illness with never having a TV or radio on. She would get upset with me if I even mentioned 'I have a phone call to make tomorrow' or 'we are out of XYZ and I have to run to the grocery tomorrow when the aide is here',
I just kept telling myself it was the disease, not her, angry with me, but again as her neuro doc said to me 'patients often lash out most at those they trust, love, and need the most in their care. Their fears just take over.'
Peace and courage -- and if you are up North anywhere ---- STAY WARM! We are at -8 here this morning!
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Good morning @tntredhead. I hope this finds you having as good a day as the gods allow. First let me say this: YOU ARE NOT WEAK! No how! No way! You are in it everyday! I looked at my caregiving like a prizefight. A new round each day and I just never knew how long the fight would last. Just do your best each day. Some days it may just be answering the bell and being in the ring with whatever amount of energy you can muster. No one of us is Superwoman or Superman. No super powers either. Just fragile, real human beings. It is good to hear you have some AM and PM help! That is awesome!
I am sorry to hear about your rotator cuffs. I developed severe carpel tunnel in both hands from the repetitive lifting of my wife and still have pain and no feeling in my fingers as a result. My orthopedist wants surgery -- I want some time in my life right now with no patients, even if it is me this time so I rationalize putting it off. I hope perhaps your GP can give you some advice on how to lift, transfer, etc. without doing any additional damage.
We, too, were isolated by my wife's disease. That was a very challenging aspect of the caregiving for me as I am a very social fellow. Our neighborhood is nice, but it is made up of about 80% second, vacation homes, so neighbors came for vacation, not to help out even if they had been inclined, which they weren't 🙂 The reality of caregiving is certainly no Lifetime movie, that is for sure!
I send you strength, peace, and courage -- and remember sometimes courage is simply taking on our 'fight' for our loved one the next day!