Monthly Archives: September 2018

The Family Of Stroke Victims Seen From The Inside


My dad is literally disappearing before our eyes. They don’t tell us much and until today I refrained from looking up symptoms, info and support groups. I need them. I am constantly bothering my therapist who is willing to help me out, but I need to understand more about what is going to possibly happen and be prepared.

My sister is strong. She doesn’t let her emotions ride on her sleeve. Is she scared? Of course she is. She just holds it better. She makes all decisions only when the two of us have talked over what is best for dad and agree to it.

He is losing his memories as his brain continues to die. He doesn’t want to live anymore and wants to be with mom. I understand this and he is letting things go we think. We don’t blame him. He wants to go and as much as that hurts it is something he has a right to want. He has an advanced directive and it states what he wants or doesn’t want. Currently his heart is strong. Heart attack is not likely right now. He talks suicide, but that shouldn’t be easy for him to do. We figure the most he can do is to stop eating and drinking and he has a directive that says no feeding tube or fluids except pain medicine. He hasn’t given up yet, still eating and drinking so he isn’t seriously thinking suicide yet.

The poor man is proud and now he has to have help using the bathroom and is incontinent so wears diapers. He whispers how embarrassed he is. I don’t blame him and right now if I pass over I would rather go in my sleep. We saved him and he doesn’t remember life and how you do things or anything new. Long term memory is going slower. Short term faster.

I am off to look up strokes and find a support group.

Tessa

Advocate for mental health and invisible illnesses, also a devout Christian

Author – http://www.finallyawriter.com (this blog contains my old work mostly although occasionally I do add something new here), new work is mainly on this blog http://www.tessacandoit.com

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New Hair Cut


Cut off the scraggly mess!

Strokes, Fibromyalgia, Spinal Degeneration and BusyBodies


Due to my physical and mental issues I have to cut my visiting the rehab center down to maybe once a week. At the blink of an eye I am crying. I am tired of people seeing me crying and having loss of my emotions so that I have to constantly contact my therapist to calm me down. My dad is fading away. He doesn’t want to live. He is done with this life and ready to go to heaven to be with his beloved wife. How do you have a conversation with someone who can’t remember his life or much of yours? My dad was a football (USA) freak and if his favorite team wasn’t playing he would watch another game with just as much enthusiasm. Now he refers to the Philadelphia Eagles as those green guys throwing a ball around and why were people clapping? His joy of football is gone. He was avid with politics and they were always on and he was up on everything, Now he isn’t even sure what country he is in and spends a lot of time in WW2 or his childhood.

Now we come to the busybodies. My sister and I are having to make emotional decisions as to our dad’s care. If you ever had to make those decisions for a loved one you know it is not easy and it hurts to have to decide where your loved one will live. Is he going to be safe? Well taken care of? And the ton of paperwork and the government comes in and in one fell swoop everything he worked for all his life is gone. We are not rich. He can’t afford home care for 24/7. So we must liquidate the man’s belongings and apply to the government (Medicaid in the USA) to pay for his upkeep and care. He kept my mom at home and was her sole caregiver. It was hard on him, but he didn’t complain, but we don’t have the same option now. She had Parkinson’s Disease and Dementia and by the time she needed full time care he had retired early and was there. He didn’t want our help, it was his wife and his responsibility according to his wedding vows. My sister did try to get them to go to assisted living where he could go with her, but they would take care of her. They refused. My mom wanted to go to a nursing home now called Long Term Care, but when we explained it she chose to stay home with dad. This is not the same situation. He can’t be left alone. He knows he is not supposed to get out of the chair or the bed, but tries often. He needs constant care which we can’t give him. We are doing the best that we can. When he’s lucid he understands and is fine with long term care and then he’ll flip the other way and it’s all about when he’s going home. Neither conversation is pleasant.

Those of you who have never been through something like this keep your comments to yourself. We feel guilty enough even though we are doing every thing we can for the man who raised us.

The pain and popping in my spine is getting worse. I can barely move and I have to wait until October 2 before I get the 6 facet joint injections in my spine and due to new laws my weight won’t allow me to have sedation. I had just one in my knee and screamed bloody murder so can only imagine 6 of them at once. All I can have is local anesthesia. It doesn’t do much. And the stress is allowing my Fibromyalgia to flare up as well and for 5 days before the injections I can’t have my NSAID arthritis medicine so don’t know how this is going to work. I am terrified of just going off my arthritis medicine. I can still take the percosets which help, but not much. I need the combination, but NSAIDS are blood thinners and not allowed 5 days before.

Tessa

Advocate for mental health and invisible illnesses, also a devout Christian

Author – http://www.finallyawriter.com (this blog contains my old work mostly although occasionally I do add something new here), new work is mainly on this blog http://www.tessacandoit.com

More downsides to strokes.


Just when we think he is settled, has accepted the current and future situation, he throws a monkey wrench into the works. Now he has informed us that they are teaching him to drive so he can drive when he goes home. He had agreed with us that he wasn’t going home and even if somehow that happens, he will NOT be driving. It is just not happening.

I can’t take all this constant changing and upset. I had no idea at what was in store for us from a stroke. I don’t know where he got the idea he will be driving let alone going home. Wishful thinking I gather.

Not sure what tomorrow will bring.

Tessa

Advocate for mental health and invisible illnesses, also a devout Christian

Author – http://www.finallyawriter.com (this blog contains my old work mostly although occasionally I do add something new here), new work is mainly on this blog http://www.tessacandoit.com

Food banks here in NJ – Rehab Facility


Today I went to the food bank. I feel weird going and getting free food, but my low income makes me eligible and at least we have a communal table that everyone puts the food they don’t eat on and that way there is no waste.

Just realized no pasta this month and not much spaghetti sauce. We did go later though. I got fish this time instead of another whole chicken. I need to start eating at home, but with all this running around to the rehab facility where my dad is makes me eat on the run. I got to stop this.

There is someone there preying on the seniors especially. Talked my dad into wanting this hair dyed black again and a haircut. She is not from the facility and she tells them it is free while hoping they will tip her most of what they would have paid the facility. We had to make him understand what was going on and I talked to the social worker there and she gave us the sheet to prepay for a real haircut and we talked him out of thinking that he needed his hair dyed. His grey hair is distinguishing and black hair would look a little silly on an 86 year old man. We filled out the sheet for him and prepaid it.

He doesn’t know any better and my sister had told him to do what he is told, but this we didn’t see coming. We meant cooperate with the nurses and aides. He was giving them a hard time right after the stroke. He is trying so hard to do what makes them happy.

The other day he called me mommy. He was joking, but it was kind of sad that I had to be in the role of parent to my parent.

And then we have those that are trying to make us feel guilty because we had to make the decision to move him into long term care/nursing home after rehab is done. He will need 24/7 care and that is not an option. I wish people would mind their own business. That decision wasn’t easy for us and we shed many a tear over it and still are on occasion.

I am becoming closer to my sister. Shame it had to be our dad’s stroke that brought us together.

Tessa

Advocate for mental health and invisible illnesses, also a devout Christian

Author – http://www.finallyawriter.com (this blog contains my old work mostly although occasionally I do add something new here), new work is mainly on this blog http://www.tessacandoit.com

MRI – severe changes in spine in one year


They were to do just the lumbar spine, but for some reason they did both lumbar (lower) and thoracic (mid spine) and the results showed really bad changes. No wonder I am in such terrible pain.

Good news, no surgery yet. Bad news I have to have a series of 6 injections in the facet joints in one section and then the 2nd section. If this doesn’t help then they use radio waves in the nerves.

The girl scheduled me for more than 4 weeks and I said she wanted 2 to 3. The doctor happened to be standing there and since it was her day to work in the procedure room she could add another patient if she wanted, so I am scheduled for October 2.

Wish me luck!

Tessa

Advocate for mental health and invisible illnesses, also a devout Christian

Author – http://www.finallyawriter.com (this blog contains my old work mostly although occasionally I do add something new here), new work is mainly on this blog http://www.tessacandoit.com

Mad, Mad Day


As most of you know my world is crazy right now. My dad has been in 4 Facilities since his stroke. Today we got a call for the 5th and hopefully last one, but it was a matter of less than 2 hours to get him there. If we hesitated we would lose it. This is hopefully where he will finish his subacute rehab and then move into long term care. As much as we hate to do it he can’t go home without 24/7 care. That just isn’t an option.

Sometimes he is relieved he won’t be alone and then he wants to go home. We had to make the choice that is best for him.He seemed to like the place today.

Tessa

Advocate for mental health and invisible illnesses, also a devout Christian

Author – http://www.finallyawriter.com (this blog contains my old work mostly although occasionally I do add something new here), new work is mainly on this blog http://www.tessacandoit.com